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the severely, 
multiply 



handicapped 



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what are the issues? 



THE PROCEEDINGS FROM THE 
REGIONAL, TOPICAL CONFERENCE 



what are the issues? 



SPONSORED BY 
ROCKY MOUNTAIN 
REGIONAL RESOURCE CENTER 

DEPARTMENT OF SPECIAL EDUCATION 
UNIVERSITY OF UTAH 



MARCH 6-8, 1974, SALT LAKE CITY, UTAH 



The project reported herein was performed pursuant to a grant from the U.S. Office of 
Education, Department of Health, Education, and Welfare. The opinions expressed 
herein, however, do not necessarily reflect the position or policy of the U.S. Office of 
Education, and no official endorsement by the U.S. Office of Education should be inferred. 



Grant No. OEG-0-70-41 78 (608) 
Project No. 542930, from the 
Department of Health, Education 
and Welfare, United States Office 
of Education, Bureau of Education 
for the Handicapped. 



Dean, Graduate School of Education 
University of Utah 
Stephen P. Hencley 

Chairman, Department of Special Education 
University of Utah 
Robert L. Erdman 

Director, Rocky Mountain Regional Resource 
Center 

Department of Special Education 
Judy Ann Buffmire 

Conference Coordinator 
Rocky Mountain Regional Resource Center 
Vance Engleman 



1 



The information for this document was 
gathered in each workshop by the following 
recorders, who are students in the Department 
of Special Education, University of Utah: 

John Anderson 
Debbie DeVries 
Mike Hardman 
Ann Leming 
Jan Loveless 
Sandra Meinert 
Mary Ellen Ormiston 
Brent Pitt 
Elizabeth Vigeon 
Kris Welling 



EDITOR: Jean Moore 

CO-EDITOR: Vance Engleman 



J 



TABLE OF CONTENTS 



4 


The Guide To Initials 


5 


The Introduction 


6 


The Schedule 


7 


The Keynoters 


9 


The Workshops 


10 


Systematic Delivery System 


14 


Identification of Constraints On 




Children Served 


20 


Options for Unserved Children 


28 


What Is Relevant Education 


33 


Parent Education and Their Role 


41 


The Timelines 


42 


Idaho 


48 


Montana 


52 


Utah 


58 


Wyoming 


62 


National 


67 


The Imperatives 


69 


Appendix A: Speeches 


70 


Keynote Addresses 


90 


Thematic Statements 


101 


Appendix B: Workshop Structure 


105 


Appendix C: Conference Evaluation 


115 


Appendix D: Conference Directory 


127 


Appendix ErRMRRC Staff 



GUIDE TO INITIALS 



AAMD American Association on Mental 
Deficiency 

ACLD Association for Children with 

Learning Disabilities 

ALRC Associate Learning Resource Center 

(formerly Regional SEIMC) 

ARC Association for Retarded Citizens 

BEH Bureau of Education for the Handicapped 

CEC Council for Exceptional Children 

DDD Division for Developmental Disabilities 

EHA Education of the Handicapped Act 

ESEA Elementary and Secondary Education Act 

ERIC Education Resources Information Center 

HEW Health, Education and Welfare 

IEA Intermediate education agency 

LEA Local education agency 

LRC Learning resource center 

(formerly SEIMC) 

NASDSE National Association of State Directors 

of Special Education 

RMRRC Rocky Mountain Regional Resource Center 

RRC Regional Resource Centers 

SEA State education agency 

SEIMC see ALRC 

UAF University affiliated facility 

UCP United Cerebral Palsy 



The Conference 



THE SEVERELY, MULTIPLY HANDICAPPED - WHAT ARE THE ISSUES? 



In April, 1973, at a meeting in Coeur d'Alene, 
Idaho, the Rocky Mountain Regional Resource 
Center (RMRRC) asked the State Directors of 
Special Education (from Idaho, Montana, Utah 
and Wyoming) to list and then prioritize the 
needs of their states that were within the scope 
of technical assistance which the RMRRC could 
deliver. High on all four lists was the need to 
know more about service delivery to the severely, 
multiply handicapped. 

The discussions that day about the needs of the 
severely, multiply handicapped raised many 
pertinent questions: How do you define the tar- 
get population? What kinds of services should 
school systems deliver? How can you serve a 
severely.multiply handicapped child who lives 
in a remote rural area? Are there successful 
programs under way now? What funds are 
available to states? What services do we now 
have that we could better utilize to serve this 
population? How do you get the public to 
support the kinds of services needed? 

There was also discussion about how the 
RMRRC's technical assistance might produce 
the most significant impact on all four states, 
and in the most fiscally responsible manner. 
It was decided that a working conference 
would provide the technical assistance with 
the most potential. 

So planning began, on that day, for a regional 
topical conference. The theme— "The Severely 
Multiply Handicapped— What Are The Issues?"— 
speaks to the questions raised then and in later 
planning meetings. The five topical areas which 
the conference emphasized were also defined by 
compiling and prioritizing topics requested by 
the State Directors. They are: 

Systematic Delivery System 
Identification of Constraints 
Options for Unserved Children 
What is Relevant Education 
Parent Education— Their Role 

The states emphasized that they needed more 
than just printed or verbal information. They 
wanted to come away from the conference 
with some concrete first steps, tailor-made to 
fit into the existing state structures. 

If the states' requests were to be met, the con- 
ference would have to be tightly organized, 
involve people from across the four states, and 
utilize the best resources available. A handful 
of leaders were identified— people from across 
the nation who are forerunners in serving the 
severely, multiply handicapped. They were 



each contacted, and agreed to lead workshops 
where they could help incorporate their wisdom 
and insight into the goals, strategies and tactics 
that each workshop would produce. 

As plans proceeded, news of the working con- 
ference spread. Requests for information began 
arriving at the RMRRC from across the country. 
When the four State Directors stated their need 
to know how to best serve the severely handi- 
capped, they were articulating an emerging 
national need. For parents, teachers and admin- 
istrators, excitement and expectations about the 
conference began to grow. 

The conference on the severely, multiply handi- 
capped actually began in Coeur d'Alene a year 
ago. From the beginning, the RMRRC planned 
to compile the conference information in a way 
that would make it useful not only to partici- 
pants, but also to those who were unable to 
attend. This document, then, is the final step. 

The information presented here reflects the ded- 
icated labor of the 257 people who attended the 
conference. While most of them came from the 
four RMRRC states, a total of 1 8 states and the 
District of Columbia were represented at the 
conference. 

As you read through the following pages, keep 
in mind the conference objectives: 

Conference Goal: To provide meaningful 
technical assistance to states: 

1. Clarify issues regarding education for 
the severely, multiply handicapped ed 

2. Outline first action steps. 

3. Produce one-year timelines for each 
state in the RMRRC region on each 
topic. 

Brief explanations precede each section of the 
document. We hope the enclosed information 
will help anyone who is searching to take the 
first steps in serving the severely, multiply 
handicapped. 



THE SCHEDULE 











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THE KEYNOTERS 



ach day's activities was a 
keynote speech. The speakers represent and 
direct programs of national, significance for the 
handicapped. The RMRRC is indeed happy tha 
these men, who carry many responsibilities in 
Washington, D.C., were able to meet with us at 
this conference. Dr. Edwin W. Martin, who was 
unable to leave Washington at the last minute, 
addressed participants through a telephone con- 
ference call. 

The speeches are contained in Appendix A. 
Editing of the speeches was minimal. The words 
are still in the idiom of spoken language, and we 
hope tKat possible transcription errors did not 
change the meanings intended by the speakers. 
We appreciate their permission to include the 
texts of their addresses, sight-unseen, as part of 
this document. (The workshop leaders also gave 
permission to include their thematic statements 
without personal editing.) The photographs of 
the people which follow, and their statements 
in the appendix, are in the order of participation 
at the conference. 



"^%"m 





R. Paul Thompson, M.A. 

Mr. Thompson is the Chairman of the Task Force 
on Severely Handicapped Children and Youth, 
Bureau of Education for the Handicapped, 
Washington, D.C. 



Edwin W. Martin, Ph.D. 

Dr. Martin is Associate Commissioner, Bureau of 
Education for the Handicapped, Washington, D.C. 




8 




Fred J. Krause, M.Ed. 

Mr. Krause is Executive Director of the 
President's Committee on Mental 
Retardation, Washington, D.C. 



Francis X. Lynch, M.Ed. 

Mr. Lynch is Director of the Division of 
Developmental Disabilities, Washington, D.C. 



THE WORKSHOPS 



After the opening ceremonies and the first key- 
note speech, all participants met in state groups 
Those who attended the conference, but who 
came from states other than Idaho, Montana, 
Utah or Wyoming, met in the nation-at-large 
group. The state groups were hosted by the 
State Directors of Special Education— or their 
representatives— and Robert L. Erdman, 
Chairman, Department of Special Education, 
University of Utah, hosted the national group. 
The hosts for the states groups were, for Idaho 
John Comba, Judy Schrag; Montana: Michae 
Fredrickson; Utah: Ben Bruse, Geraldine Clark, 
Randolph Sorensen; Wyoming: Lamar Gordon, 
Jr., Thomas McCartney, Charles Vanover Jr. 

At this first meeting, each participant chose one 
of the five workshop groups with the under- 
standing he would continue with that same group 
for all working sessions. The participants then 
attended four workshops to build a tactical mode 
in the specific area (e.g., Systematic Delivery 
System). 

On the final day of the conference, the partici- 
pants again met by states. This meant that each 
state group held members who had participated 
in all five workshops. They then produced state 
timelines for each topical area. 



In the workshops, the participants learned that 
they possess the resources that will be needed 
if we are to make a significant difference in 
services for the severely, multiply handicapped. 
Those who attended this working confer- 
ence really did work— even through lunch and 
till 10:00 p.m. at night! 

The same general format was used by each work 
shop leader (Appendix B), but the leaders were 
invited to innovate within the structure if that 
seemed advisable. Thus, the form of each work- 
shop varies somewhat. The information that 
follows is unedited, as the spontaneity and real 
value of the work might have been lost had the 
work been edited for conformity. 





1. SYSTEMATIC DELIVERY SYSTEM 



Resource Person: Richard Sherr, Ed.D. 

Dr. Sherr is Director of Special Education Services, 
Lancaster-Lebanon Intermediate Unit B, Lancaster, 
Pennsylvania. 

His thematic statement is located in Appendix A 

Recorders: Mike Hardman, Kris Welling 



Overall Goal 

To provide services to all severely, multiply handi- 
capped children within the state through a system- 
atic delivery system. 





GOAL 1 .0 DETERMINE PHILOSOPHY, POPULATION TO 
BE SERVED, LAWS AND REGULATIONS, 
ROLES AND RESPONSIBILITIES, TO PROVIDE 
SERVICES TO ALL SEVERELY MULTIPLY 
HANDICAPPED CHILDREN 

Strategy 1 .1 Establish a favorable attitude and philosophy 

among the deliverers of service and those who 
will receive or benefit from services 

Tactic 1 .1 .1 Promote discussion of the issues among pro- 

fessionals, special educators, state department 
officials, school administrators, parents of 
handicapped children and personnel of other 
agencies 

1 .1 .2 Articulate a philosophy that is agreeable to 

those who will provide and receive services 

Strategy 1 .2 Entrust local school districts with responsi- 

bility to identify the population that requires 
service 

Tactic 1 .2.1 Inquire about children with local welfare or 

service agencies 

1 .2.2 Organize a publicity program that will make 

people aware of the intention to provide 
service, and encourage them to report the 
existence of children needing service 

Strategy 1 .3 A task force committee composed of pro- 

viders and consumers of potential services 
should review the laws and regulations to 
determine if they permit the state to act 
according to its philosophy 



11 



Tactic 1.3.1 Recommend necessary changes 

1 .3.2 Have parents informed of legal issues in order 

to secure their support 

Strategy 1 .4 Identify the specific responsibilities of each 

person involved in providing the service 

Tactic 1.4.1 State department 

1.4.2 School districts 

1.4.3 Legislators 

1.4.4 Institutions 

1 .4.5 Parents 

1 .4.6 Other agencies 

1 .4.7 Parent and professional organizations 

1 .4.8 Federal people 

GOAL 2.0 TO SPECIFY PERSONNEL, PROGRAMS, 

FACILITIES, COSTS, TO PROVIDE SERVICES 
TO ALL SEVERELY MULTIPLY HANDI- 
CAPPED CHILDREN 

Strategy 2.1 Determine the total personnel needs 

Tactic 2.1 .1 Identification of target 

A. IEA 

B. Other agencies 

C. Media (electronic, print, etc.) 

D. Identification of service patterns 

2.1 .2 Identification of existing personnel by 
disciplines 

A. Survey lEAs 

B. Survey SEAs 

C. Survey all other agencies 

2.1 .3 Determine training needs (see 1 and 2) 
Strategy 2.2 What programs do we need 

Tactic 2.2.1 Describe existing programs 

2.2.2 Describe new programs needed 

Strategy 2.3 Determine extent of facilities 

Tactic 2.3.1 List existing facilities 

2.3.2 Additional facilities needed: locate, establish 

Strategy 2.4 Determine costs— overall 

Tactic 2.4.1 Current financing 



2.4.2 


GOAL 3.0 


Strategy 3.1 


Tactic 3.1.1 



Strategy 3.2 

Tactic 3.2.1 
3.2.2 
3.2.3 

3.2.4 
3.2.5 

3.2.6 
GOAL 4.0 

Strategy 4.1 

Tactic 4.1 .1 

4.1.2 
Strategy 4.2 
Tactic 4.2.1 

4.2.2 

Strategy 4.3 

Forces: 



12 



Future financing needed^projected 

IMPLEMENT SERVICES FOR ALL SEVERELY 
MULTIPLY HANDICAPPED CHILDREN 

Establish goals for systematic delivery system 

Delineate preliminary goals (based on needs 
assessment) and present to parent and/or 
professional groups for refinement 

Development of alternative models for 
systematic delivery 

Review existing delivery models 

Make recommendations for pilot programs 

Provide technical assistance for implemen- 
tation of pilot programs 

Promote chosen program 

Lobby for enabling legislation 

A. Mandate 

B. Funds 

Seek provisions for other funds 

TO DEVELOP A MEANS OF ASSESSING THE 
CAPABILITY OF SERVICES TO MEET THE 
THE NEEDS SYSTEMATICALLY 

Have all the severely handicapped been identi- 
fied? 

Census 

Social services and other 

Are individual needs of student being met? 

Assessment tool (criterion measure) 

Timelines (periodic evaluation) 

Needs assessment update 

(for above goals, strategies and tactics) 

State, national, regional , local, private agencies 

(to be identified by state) 

ARCs, other parent organizations 

Task forces 

Advisory boards 

Outside consultants 

Teacher organizations 

Private physicians 

Public health 

Department of Welfare 




Ethnic council 

Civic groups 

Churches 

State mental health/mental retardation 

Bureau of Vocational Rehabilitation 

Tools: (for above goals, strategies and tactics) 

Search materials 

Newspapers 

TV, telephone, (public media) 

Word of mouth 

School census 

Questionnaires 

Evaluation institutions 

Databanks (e.g., ERIC) 

Curriculum guides 

Instructional materials 

Equipment 

Consultants 

Physicians 

Workshops 

In-service programs 

Various support services 

ALRCs 

RRCs 




2. IDENTIFICATION OF CONSTRAINTS ON GETTING CHILDREN SERVED 



Resource Person: Albert J. Berkowitz, Ed.D. 

Dr. Berkowitz is Deputy Assistant Commissioner 
for Mental Retardation, Department of Mental 
Health, Commonwealth of Massachusetts. 

His thematic statement is located in Appendix A. 
Recorders: Ann Leming, Elizabeth Vigeon 



CONSTRAINT: 
GOAL 1.0 

Strategy 1 .1 
Tactic 1.1.1 

Tools: 

Technical 
Assistance: 

Evaluation: 
Strategy 1 .2 

Tactic 1.2.1 

Tools: 

Technical 
Assistance: 





CONSTRAINT: 



GOAL 2.0 



Inadequate interdisciplinary and intradisci- 
plinary interchange 

PROVIDE STRUCTURE IN WHICH PROFES- 
SIONALS OF VARIOUS DISCIPLINES CAN 
COME TOGETHER AND ESTABLISH A 
COMMON SET OF PRIORITIES 

In-service training for inter- and intradiscipli- 
nary staff (to include district staff) 

Recruit and select in-service training team 
A. Conduct survey of professionals' 
attitudes and needs 

In-service curriculum; sales pitch for 
in-service 

RRC, ALRC 

75% of participating professionals agree on 
their top priorities 

Conferences (include administrators) speci- 
fically to set priorities for local area concerning 
the multiply handicapped 

Contact all relevant agencies to establish date 

and secure their participation 

A. Establish leadership for conference 

Questionnaire for survey of attitudes/needs; 
promotion propaganda for conference 

School counselors (key implementors); State 
Departments of Education; local school 
administrators 



Inadequate interdisciplinary and intradisci- 
plinary interchange 

ADOPT A CURRICULUM AND NEW VIEWS 
TOWARD THE MULTIPLY HANDICAPPED 
WHICH INCORPORATE A COMMON TERMI- 
NOLOGY 



Strategy 2.1 



Tactic 2.1.1 



Tools: 

Technical 

Assistance: 



Evaluation: 



Strategy 2.2 



Tactic 2.2.1 



Tools: 



Technical 
Assistance: 



Establish a plan in universities which would 
enable various disciplines to share curriculum 
relevant to the severely multiply handicapped 

Contact Deans of various schools in various 
disciplines to meet and draw plans for 
curriculum sharing 

A. Prepare a proposal to be presented to 
Deans concerning curriculum sharing 

Developed curriculum for universities 

State Board of Higher Education; university 
department chairpersons (key implementors) 

If Deans met, agreed on curriculum sharing, 
and established a curriculum for use in their 
programs 

In-service training program on interdisciplinary 
level 

In multi-disciplined agencies, in-service 
rotation of disciplines (two-week model) 
A. In single-discipline agencies, have a cross- 
exchange between disciplines 

Glossary of terminology for interdisciplinary 
professionals; two-week rotation model for 
interdisciplinary in-service 

Local agency and school administrators; 
university department heads of special education 



15 



CONSTRAINT: Lack of public awareness of the needs of the 

multiply handicapped 

GOAL 3.0 TO RAISE THE LEVEL OF COMMUNITY 
AWARENESS REGARDING MULTIPLY 
HANDICAPPED PERSONS SO THAT PEOPLE 
RECOGNIZE THE RIGHT OF HANDICAPPED 
PERSONS TO AN APPROPRIATE INTER- 
VENTION TOWARD PERSONAL DIGNITY 
AND POTENTIAL 

Strategy 3.1 Agencies will request technical assistance perti- 

nent to awareness from regional centers, e.g., 
RRCs, ALRCs 

Tactic 3.1.1 Identify by national, state and local levels, 

existing resources (agencies, programs, indi- 
viduals) which may contribute to awareness 
campaign 

3.1 .2 Conduct workshops on how to tap these 

resources; obtain approved, effective litera- 
ture to be used in campaign 



3.1 .3 Select and use appropriate agencies and 

resources for application to local problems 
dealing with awareness 

Strategy 3.2 LEA special education personnel, informed of 

services for the severely multiply handicapped, 
will inform other special educators, regular 
education teachers and ancillary personnel of 
services to that handicapped population 

Tactic 3.2.1 Develop or acquire a multi-media presentation 

appropriate to that handicapped population. 

3.2.2 Conduct training/workshops, or whatever 
method is appropriate for target population, to 
present this multi-media package 

3.2.3 Use package in sectional meetings in state con- 
ventions of professional organizations 

Strategy 3.3 Include medical profession in campaign for 

awareness of the severely multiply handicapped 
as human beings 

Tactic 3.3.1 Locate sympathetic medical person who will 

infiltrate the local profession and arrange for 
a presentation of the package 

3.3.2 Place literature in medical centers, doctors' 

offices, etc. 



16 



Strategy 3.4 Include churches, etc., in campaign 

Tactic 3.4.1 Contact local ministerial council and arrange 

for presentation, placement of literature 

3.4.2 Include youth groups or other church organi- 

zations for presentations, etc. 

Strategy 3.5 Include PTA 

Tactic 3.5.1 Identify exceptional child chairman of PTA 

3.5.2 Arrange for presentation to PTA 

Strategy 3.6 Include university groups: e.g., sororities, etc. 

Tactic 3.6.1 Arrange for meeting with Panhellenic League 

3.6.2 Organize planning and training session to 

include interested persons; give presentation 

Strategy 3.7 Include civic groups: e.g., Lions, Rotary, etc. 

Tactic 3.7.1 Identify responsible club officer 

3.7.2 Arrange presentation to group 

Strategy 3.8 Utilize volunteer programs, such as foster 

grandparents, etc. 



Tactic 3.8.1 Contact local volunteer groups; plan meetings 

3.8.2 Identify individuals who seem prepared to 
respond to their new awareness with action 

3.8.3 Organize a volunteer program (individual 
training, placement, evaluation, follow-up) 

Strategy 3.9 Utilize handicapped students as teachers and 

aides 

Tactic 3.9.1 Engage students to help implement strategies 

4.1 and 4.8 

Strategy 3.1 Utilize elementary school peers as "special 

friends" or advocates for severely handicapped 
children 

Tactic 3.10.1 Select pairs and match 

3.10.2 Control activities to avoid exploitation of 

either severely, handicapped or regular children. 

Strategy 3.1 1 Present special community-wide programs to 

demonstrate abilities of severely handicapped 
children 

Tactic 3.1 1 .1 Seek out special abilities of interest to 

general public. 

3.1 1 .2 Organize events to display these talents, 

again avoiding exploitation 




CONSTRAINT: Cost involved in providing services to the 

severely handicapped 

GOAL 4.0 CLARIFY, MODIFY AND SYSTEMATIZE 

BUDGETS RELATIVE TO PROVIDING ADE- 
QUATE SERVICES FOR THE SEVERELY 
MULTIPLY HANDICAPPED 

Strategy 4.1 Clarify existing funding mechanisms 

Tactic 4.1 .1 Designate a specialist in grant writing and 

convince funding sources of the need to mod- 
ify stratigies which prove ineffective in 
accomplishing stated objectives 

Strategy 4.2 Develop fiscal and program accountability 

Tactic 4.2.1 Develop tools such as program or activities 

report for fiscal accountability; develop a 
cost allocation plan with a line-item budget 

Strategy 4.3 Provide resource personnel who can assist in 
advocacy of existing programs for the handi- 
capped 



Tactic 4.3.1 State Department of Education plans and 

conducts a series of workshops with appropriate 
agency administrators, teachers, fiscal managers, 
evaluators, citizens and handicapped persons 

Strategy 4.4 Systematically collect and disseminate available 

information for fiscal funding to appropriate 
legislators, state agencies, local government units 

Tactic 4.4.1 Designate a specialist in grant writing and con- 

vince funding sources of the need to modify 
strategies which prove ineffective in accom- 
plishing stated objectives 

Strategy 4.5 Establish a system for identifying handicapped 

children in and out of school who are not 
receiving appropriate services 

Tactic 4.5.1 Establish a system for identifying currently 

unserved and underserved children; utilize a 
viable model for the state's characteristics, 
such as the model presently in use in Casper, 
Wyoming (Council of Social Services) 

Strategy 4.6 Sharing of knowledge and techniques by pro- 

fessionals and parents to jointly determine 
priorities 

Tactic 4.6.1 Establish a communication process that will 

insure mutual understanding of the program, 
the target group, and the method of reaching 
goal 

Strategy 4.7 Increase opportunities for interagency 
cooperation 

Tactic 4.7.1 Work with appropriate agencies, administrators 

to determine role each has with regard to pro- 
gram area, fiscal management area, evaluation 
and monitoring 

Strategy 4.8 Identify implementors for 7 strategies above 

Tactic 4.8.1 Identify professional administrative staff mem- 

bers who could help implement above strategies 

4.8.2 Identify funding agencies 

4.8.3 Identify consultants who could help implement 
above strategies: i.e., legislators, handicapped 
individuals, parents, teacher/trainers, citizen 
advisory groups 

Evaluation: Evaluation of above strategies will be contained 

in the measurable goals and objectives 



18 




Strategy 5.1 


Strategy 5.2 


Strategy 5.3 



CONSTRAINT: Bureaucracy is a barrier to service delivery 

GOAL 5.0 TO BRING INFLUENTIAL REPRESENTATIVE 
GROUPS TOGETHER IN ORDER TO INFLU- 
ENCE THE BUREAUCRACY TO PROVIDE 
ADEQUATE SERVICES 



Form coalition of interest groups— consumers 
and providers 

Schedule regular ongoing legislative committee 
meetings with providers of special services 

Increase number of providers on decision- 
making boards 



Tactics: (for above 3 strategies) 

1 . Identify interested groups 

2. Form conferences for assembling leaders; 
develop an ad hoc committee by some 
means (through CEC, ARC, school systems, 
advisory boards, etc.) 

Forces: (for strategies and tactics above) 

1 . Leaders identified above instigate organized 
action through the interested groups in 
local, regional and statewide efforts 

2. Local workshops develop information and 
action on: 

A. Knowledge of issues 

B. Lobbying 

C. Publicity: use of media to develop 
awareness 

. to get individuals to write to 

bureaucrats, etc. 
. to get commitment from individuals 

to work in united effort 



Evaluation 
Strategies: 



(for strategies and tactics above) 

1 . Is the coalition of leaders of the interest 
groups functioning? 

2. Have specific plans been made for organiza- 
tion of workshops on regional or local levels? 

3. Have pamphlets been published to dissemi- 
nate information? 

4. Have citizens written congressmen? 

5. Have lobbyists exerted influence on 
politicians? 

6. Are local interest groups working in coopera- 
tive efforts? 



3. OPTIONS FOR THE UNSERVED CHILDREN 



Resource Person: Elsie D. Helsel, Ph.D. 

Dr. Helsel is the Washington Representative for 
United Cerebral Palsy. 

Her thematic statement is located in Appendix A. 

Recorders: Joan Anderson, Brent Pitt 



GOAL 1.0 





Strategy 1 .1 


Tactic 1.1.1 


1.1.2 


1.1.3 


1.1.4 


1.1.5 


1.1.6 


mplementation: 


Strategy 1 .2 


Tactic 1.2.1 



1.2.2 

1.2.3 
Implementation: 



EXPAND EXISTING PROGRAMS, APPROPRIATE 
TO THE NEEDS OF SEVERELY HANDICAPPED 
CHILDREN 

Obtain an index of existing services and a general 
description of each— both public and private 

Contact state and local agencies— both public and 
private 

Obtain program descriptions and entrance 
requirements 

Compile findings and publish 

Disseminate 

Establish a means to keep information up to date 

Establish inter-agency communication 

Index of existing services to be published by 
SEA staff 

Establish evaluation criteria for existing programs 
relative to children's needs 

Prepare a list of evaluation indices using: 

A. State guidelines 

B. Published and private agency input 

C. Health and safety factors 

D. Staff competency guidelines 

E. Consulting expertise 

F. Parent input 

Establish a needs assessment team to apply above 
indices 

Establish an accreditation team 

1 . Establish a Governor's Advisory Committee 
for the Multiply Handicapped 

A. Committee is to appoint an evaluation 
task force 

2. Evaluation criteria composed by task 
force with input from: 



A. Administrators 

B. Parents 

C. Teachers 

D. Other professionals 

E. Public and private agency represen- 
tatives 

F. Politicians 

G. State specialists 

3. Assessment team to be appointed by task 
force 

4. Accreditation team to be appointed by task 
force and given authority from Governor's 
Advisory Committee to: 

A. Make recommendations for additional 
funding 

B. Compile a list of accredited facilities 

Strategy 1 .3 Establish appropriate funding support 

Tactic 1 .3.1 Obtain funding for birth-to-death age group 

A. Title VI EHA funds 

B. Title III ESEA funds 

C. Developmental Disabilities funds 

D. Establish programs for birth-to-five-year-old 
age group and then petition for funds 

a. demonstrate cost-effectiveness basis 

E. Search for additional funding 

a. major medical insurance 

b. grants, foundations, etc., from agencies, 
clubs, churches, etc. 

c. consultant expertise 

d. local school districts (individually, or 
through cooperative efforts) 

e. fund-raising projects 

f. gifts 

Strategy 1 .4 Establish communication lines for information 

dissemination concerning program options 

Strategy 1 .5 Identify constraints in following areas: 

A. Manpower 

B. Curriculum 

C. Supportive services 

D. Materials 

E. Facilities 

F. Bureaucratic red tape 

G. Inadequate or inappropriate training of 
teachers 

H. Funding 
I. Attitudes 



Strategy 1 .6 Incorporate new delivery patterns within exist- 

ing delivery facilities 



21 



Implementation: 1 . Existing programs to be evaluated by 

assessment teams upon invitation 
A. New programs implemented on basis 
of this evaluation 
2. Administrators and teachers to implement 
new programs 



GOAL 2.0 



Strategy 2.1 
Tactic 2.1.1 



2.1.2 



2.1.3 

2.1.4 
Implementation: 

Strategy 2.2 

Implementation: 
Strategy 2.3 

Implementation: 

Strategy 2.4 
Implementation: 

Evaluation: 



22 



CREATE NEW DELIVERY SYSTEMS, APPRO- 
PRIATE TO THE NEEDS OF SEVERELY 
HANDICAPPED CHILDREN 

Define or identify new service alternatives 

Define alternatives for the homebound 

A. Visiting teacher (with support personnel) 

B. Parent or support personnel 
training packages 

C. Telecommunications 

D. Mobile mini-units 

Parent in-service training in demonstration 
units 

A. Demonstration clinic 

B. Video-taping 

C. Foster and residential settings 

Contracted services 

A. Professional foster parents 

B. Group homes (residential halfway houses) 

C. Individual contracting within community 

On-the-job training 

Identification of new service alternatives 
completed by SEA staff 

Write descriptions of the above programs to 
facilitate information dissemination (include 
bibliography of sources) 

Descriptions of new program options will be 
written by SEA staff 

Implement program options according to: 

A. Client needs 

B. Geographical constraints 

C. Multi-agency resources 

By local school districts, RRCs, colleges and 
universities, cooperative service agencies 

Assess client needs 

Assessment of client needs by team in con- 
junction with serving agencies and parents; 
additional intensive staffing on request of 
administrators, staff or parents 

(above goals, strategies and tactics) 

1 . Have objectives been met? 

2. Publish a list of criteria for evaluation of 
existing programs 

3. Publish a comprehensive list of new 
programs and program descriptions as 
they are developed and implemented 

4. Evaluation of specific objectives by 
task force or appropriate group for each 
objective 



GOAL 3.0 TO DETERMINE THE BEST PRACTICES IN 
MANPOWER UTILIZATION AND TRAINING 
FOR ALL SEVERELY MULTIPLY HANDI- 
CAPPED PROGRAMS 

Strategy 3.1 To recruit trained educators for the severely, 

multiply handicapped 

Tactic 3.1 .1 To develop an adequate method of communi- 

cating needs 

A. Notices in national journals 

B. Opportunities at national conventions 

C. Contact universities and colleges 

D. Talk with peers— word of mouth by those 
who hire or their representatives 

E. Notify related organizations 

3.1 .2 Provide increased and attractive salary 

A. Educate the legislators (lobby) 

B. Equitable salary and career ladders 

C. Contract for services 

D. Change administration policy on salary 
and contracts 

E. Arbitration by teachers and others 

3.1 .3 Incentive pay for rural and remote areas 
(consultative time allowances) 

3.1 .4 Extend professional development of rural/ 
urban agencies that is of value to be 
affiliated with 




Resources: Comprehensive manpower recruitment, oppor- 

tunities for more education by educators of 
severely, multiply handicapped 

Implementation: Local education association, intermediate 

education association, institutions, commu- 
nity agencies— public and private 

Evaluation: 1. Document personnel hired showing data by: 

level, agency, yearly total, attrition rate, 
where trained, certification and experience 

2. Interagency comparison 

3. Are objectives fulfilled 

4. Are teachers still there 

5. Analyze data on information, communi- 
cation efforts, returns, etc. 

Strategy 3.2 To retrain on-staff educators and recruit and 

train parents, paraprofessionals and volunteers 

Tactic 3.2.1 Workshops and institutes 

A. On-site (closed circuit TV, video taping 
exchange) 

B. At other agencies: RRCs, ALRCs, State 
LRCs, universities, parent groups (provide 
scholarships for training) and institutions 
and agencies for the severely, multiply 
handicapped 



3.2.2 RRC training capability 

3.2.3 Developmental Disabilities Technical Asis- 
tance System at Chapel Hill, North Carolina- 
access through the Division ot Developmental 
Disabilities 

Resources: Universities and colleges, UAFs, institutions, 

RRCs, SEA institutes financed with DDD 
monies, LEA in-services, parent group training 
sites and volunteer agencies 

Implementation: Other teachers, paraprofessionals, consultants, 

universities, agency sponsored in-service 
training, LEAs, private agencies by contract, 
and federal support services (RRCs) 

Evaluation: Survey of how many teachers retrained and 

assess quality of the product by monitoring 
student growth based data 

Strategy 3.3 To obtain training resources from existing 

institutions, agencies, professionals, etc. 

Tactic 3.3.1 Determine who, how and what: i.e., sources 

of funding for training— BEH, SEA, foundations, 
community agencies, parent groups, volunteer 
agencies, religious organizations 

3.3.2 Writing grants for projects with training 
components 

3.3.3 Communicate need for new and additional 
training 

3.3.4 Influence educational agencies to develop 
training for severely, multiply handicapped 

3.3.5 Contract with private or public agencies to 
develop and provide training 

Resources: RRCs, regional HEW offices, state LRCs, state 

DDD programs, volunteer groups for seed 
money, volunteer groups for training sites, 
universities, colleges, etc. 

Implementation: Other teachers, paraprofessionals, consultants, 

universities, agency sponsored in-service 
training, LEAs, contract with private 
agencies and federal support services (RRCs) 

Evaluation: 1. Document funding locations 

2. Program effect of funding source informa- 
tion and utilization 

A. Who needs information 

B. Amount of funding 

C. Innovative changes 



24 




Strategy 3.4 To mount a need assessment of manpower 

requirements for education for the severely 
multiply handicapped 

Tactic 3.4.1 Determine variables to assess 

3.4.2 Develop a search strategy 

3.4.3 Obtain funds 

3.4.4 Gather data 

3.4.5 Analyze results 

3.4.6 Gestalt needs 

3.4.7 Determine priorities 

Resources: LEAs, universities, university students, DDD 

agencies, comprehensive health planning 
councils, state education research and plan- 
ning councils, Head Start and other Title 
programs 

RRCs, university students, SEAs, DDD 
agencies, comprehensive health planning 
councils and university assistants 

1 . Did you get it? 

2. Was data relevant and needed? 

TO INFLUENCE POSITIVE CHANGE IN 
POLICY AT ALL LEVELS FOR SEVERELY 
MULTIPLY HANDICAPPED TO IMPLEMENT 
APPROPRIATE PROGRAMS 

Find out what policy exists at all levels 

Get report of non-written guidelines 

A survey composed of a questionnaire and/or 
interview of 25 selected citizens, school 
administrators and 10 selected members of 
the instructional staff to determine positive- 
ness, acceptance and commitment as defined 
in questionnaire toward the severely multiply 
handicapped to be sent out 

Forces: School board association, parent groups, 

professional groups 

Evaluation: Return of 75% of questionnaires 

Tactic 4.1 .2 Get written rules from all levels 

Tools: A survey sent to school boards and state 

board of education 

Forces: School board associations and state board of edu- 

cation, professional and parent groups, universities 



Implementation: 



Evaluation: 



GOAL 4.0 



Strategy 4.1 

Tactic 4.1.1 
Tools: 



Evaluation: 

Strategy 4.2 
Tactic 4.2.1 

4.2.2 
Tools: 



Forces: 



Evaluation: 



Strategy 4.3 
Tactic 4.3.1 

4.3.2 

4.3.3 

Tools: 



100% of obtainable, available written policy 
statements will be acquired. 

Find out resources 

Identify agencies providing services to severely, 
multiply handicapped 

Compile a registry of human resources 

A. Contact state board of education for list of 
agencies 

B. Obtain published directories, e.g., Closer 
Look (BEH), Directory of Services for the 
Handicapped 

C. Contact parent groups 

D. Contact related professions 

(to carry out the program) 
Professional and parent organizations: CEC, 
ACLD, ARC, AAMD, NASDSE, BEH, UCP, 
DDD agencies 

A. At least 1 5 agencies providing services will 
be contracted 

B. At least 15 specialists in areas of service to 
severely, multiply handicapped will be 
contracted 

Identification of needs 

Served and non-served severely, handicapped 
will be idebtified 

Facilities will be assesed 

Manpower will be registered 



A. 
B. 



C 



D. 



Get available data 

Saturation of the media announcing the 
search for all severely, multiply handi- 
capped 

Questionnaire sent home with children to 
determine the existence of all severely, 
multiply handicapped 
Obtain school data 



26 



Forces: (to carry out the program) 

State agencies, federal agencies, local, i.e., 
Department of Mental Health, parent groups 

Evaluation: A. At least 1 5 agencies providing services will 

be contacted to determine the number of 
severely, multiply handicapped actually 
served. Compare national expectancy with 
actual served and identify at least 100% 
more which are presently non-served 

B. List of existing facilities 

C. List of available personnel 




Strategy 4.4 

Tactic 4.4.1 

4.4.2 

4.4.3 

4.4.4 

Tools: 

Evaluation: 
Strategy 4.5 

Tools: 



Forces: 



Evaluation: 

Project 
Evaluation: 




To design proposal to change attitudes 

Assign responsibility 

Use consultation for analysis of data 

Funding 

Write out plan 

A person available to design a model for the 
proposal by reviewing existing models and 
consulting experts. A second tool is funds. 

Acceptance of written proposal 

Through results of the identification of 
resources and the needs survey, apply pressure 
on administrators, school boards, community 
groups and parents 

A. People, interviews, discussions, presentations 

B. Press releases 

C. Utilization of community groups 

D. Legislation— lobbying 

E. Litigation 

(to carry out the program) 
School board association, professional and 
parent groups, state agencies, federal agencies, 
local agencies, i.e., Dept. of Mental Health, 
and universities 

Implementation of proposal 

All severely, multiply handicapped being served 




\ 




■-'' 




4. WHAT IS RELEVANT EDUCATION? 



Resource Person: Louis Brown, Ph.D. 

Dr. Brown is Associate Professor, Department of Behavioral 
Disabilities, at the University of Wisconsin. 

His thematic statement is located in Appendix A. 





GOAL 1.0 


PRESERVICE 


Strategy 1 .1 


Tactic 1.1.1 


1.1.2 


1.1.3 


1.1.4 


1.1.5 


1.1.6 



1.1.7 



1.1.8 



Strategy 


1.2 


Tactic 1 


.2.1 


1 


.2.2 


I 


.2.3 



1.2.4 



TO IMPROVE TEACHER TRAINING 



Coordinate between public school, university 
and state department 

Instigate dialogue 

Identify a prime-mover 

RRC to act as coordinator 

Invite university professors to visit public 
schools 

Articulate what is needed in a teacher 

Develop community advisory committee com- 
posed of special education directors, special 
education teachers, special education students 
and parent representatives 

Responsibility of community advisory 
committee: 

A. Survey university feedback from students 

B. Review university program 

C. Survey employer feedback 

D. Develop needs assessments 

E. Research California's Ryan Act 

F. Identify constraints on the university 

University to include representatives from the 
school district 

Introduce extensive practicum 

Identify key locations 

Identify certified teachers and schools 

Expose students to institutional and classroom 
situations and provide feedback and evaluation 
on student performance. Wide-range exposure 
for all students. 

Develop live-in situation for students in residen- 
tial settings 



1 .2.5 Identify legal constraints on practicum require- 
ments 

1 .2.6 Schedule classes to allow the students to be in 
the public schools during the day 

1 .2.7 Recruit students to become active participants 
in the classroom so the student becomes an 
indispensable agent in the classroom 

1 .2.8 Use the student as liaison between the univer- 
sity and the public school on what needs to be 
taught 

1 .2.9 Procure Title VI money by writing a proposal 
that is marketable on a state-wide basis 

1 .2.1 Look into the possibility of obtaining local 
money from vocational education funds 

1 .2.1 1 Determine model program for demonstration 
funds 

1 .2.1 2 Teachers and students tour workshop areas 
during the summer and develop task analyses 

Strategy 1 .3 Joint appointments between LEA and university 

IN-SERVICE 

Strategy 1 .4 Demonstration centers 

Tactic 1 .4.1 Select key location for demonstration center 

1 .4.2 One center, containing entire package of experi- 
ence and personnel in one key location 

1.4.3 Obtain qualified and professional staff 

1 .4.4 Utilize manpower pool for programming (BEH) 

1 .4.5 Procure demonstration funds via curriculum 
manual development for dissemination 

1 .4.6 Pick children on basis of real need 

1 .4.7 Use training staff and university in a cooperative 
effort to insure success of demonstration center 

Strategy 1 .5 Floating mobile in-service training (1ST) 

facilities-demonstrations 

Tactic 1 .5.1 Floating library facilities 

1 .5.2 Set up busmobile-type itinerant schedule 

1 .5.3 Bring outside classroom groups (with their 
teacher) into demonstration center 



29 




1 .5.4 Utilize video-tape cassettes which show teachers 
using material with children 

A. Differentiate (various procedures with 
individual children) 

1 .5.5 Outline fundamental learning sequences 

1.5.6 Vertical-horizontal program (teaching and 
verification) 

1 .5.7 Preschool demonstration of facilities to take 
place in the summer before the beginning of 
the school year. 

1 .5.8 Reincorporate the "poor" teacher with 
demonstration model 

Strategy 1 .6 More practical methods courses 

GOAL 2.0 TO IMPROVE AND DEVELOP INSTRUCTIONAL 
CURRICULUM 

Strategy 2.1 Review literature and disseminate information 

Tactic 2.1 .1 Sell idea of information system to school dis- 

tricts in relation to regular education classes 

2.1 .2 Send it out to teachers in sample form and 
make them request it because they found it 
useful 

2.1 .3 Delineate a manpower pool and get on the 
mailing list 

Forces: (to carry out program) 

1. University 

2. State department 

3. Teachers assigned in each district 

4. Area Learning Resource Centers 

5. Regional Resource Centers— establish a 
system for use throughout the country 

6. Teachers from each school assigned to 
the superintendent who has the infor- 
mation 

7. Someone (teacher or nonteacher) review, 
send information out through supportive 
personnel (resource teacher, etc.) 

8. Local CEC chapters 

Strategy 2.2 Develop new procedures for working with 

severely, multiply handicapped 

Tactic 2.2.1 Utilization of interdisciplinary coordination: 

doctors, dentists, occupational therapists, 
physical therapists, public health nurses, wel- 
fare workers, speech therapists, audiologists 
A. Involve professionals 

1. Invite them to visit school 

2. Get on their advisory boards 

3. Invite university students in different 



professions (i.e., medical students to 
intern in school district) 

B. Demonstrations given to teachers by 
specialists in other areas so teachers can 
carry on if specialists not available 

C. Money— buy services of doctor, dentist, etc. 

D. Attend other specialists' conventions 

1 . Tape proceedings for dissemination of 
information 

2. Lobby; have well conceived plan for 
requesting help 

3. Attend auxiliary meetings (get wives of 
specialists interested) 

E. Check on existing agencies (i.e., Crippled 
Children's Hospital) 

2.2.2 Demonstrations 

A. Video tapes (video libraries) 

B. Slides and tapes 

2.2.3 In-service training during school 

A. Substitute teachers hired to release 
teachers for in-service training 

B. Free Friday afternoons (or staggered) 

C. Days of professional leave made available 

Strategy 2.3 Establish more effective utilization of existing 

mechanisms for sharing new ideas 

Tactic 2.3.1 Literature review 

2.3.2 Professional organizations such as CEC utilized 

2.3.3 Increased sharing of ideas informally among 
teachers 

2.3.4 Mailing lists 

GOAL 3.0 TO DEVELOP STATE STANDARDS TO 
REFLECT NEEDS 



Strategy 3.1 



Identify competencies 



Tactic 3.1 .1 Organize a task force composed of state, 

university and local personnel 

3.1 .2 Regional organization (RRC or ALRC) to dis- 

seminate information, national materials, 
programs, workshops 

Strategy 3.2 Changes should be made in certification (tie 

certification to competencies and three 
certification levels) 

Tactic 3.2.1 Offer provisional certification and alternate 

licenses (paraprofessional) for those already 
in the field 



31 



3.2.2 Ongoing, periodic review of certification to 

see if competencies relate to known required 



3.2.3 "Emphasis" added to full certification 

3.2.4 Certification task force reviews practicum 
experience 

3.2.5 Change course requirements to match public 
school requirements (needs) 

Strategy 3.3 Legislate for ratio 

Tactic 3.3.1 Data collection of "real" classroom needs to 

present to decision makers to show what 
ratios are adequate 

3.3.2 Disseminate knowledge on valuable volunteer 

service programs in region from RRC to ALRC 




5. PARENT EDUCATION AND THEIR ROLE 



Resource Person: Philip Roos, Ph.D. 

Dr. Roos is Executive Director, National Association 
for Retarded Citizens, Arlington, Texas. 

His thematic statement is located in Appendix A. 
Recorders: Debbie DeVries, Jan Loveless 





GOAL 1.0 TO REACH CONSENSUS BETWEEN PARENTS 
AND PROFESSIONALS IN DEFINING CLEAR 
OBJECTIVES 

Strategy 1 .1 Identify and prioritize perceptions of needs 

seen by parents and professionals 

Tactic 1 .1 .1 Survey of professionals as well as of parents 

1 .1 .2 Sample representatives from groups 

Tools: Check list of needs 

Strategy 1 .2 Cooperative exchange of information and 

feelings about needs and their priorities for 
handicapped children 

Tactic 1 .2.1 Small group meetings in which professionals 

reach consensus 

1 .2.2 Small group meetings in which parents reach 
consensus 

1 .2.3 Regularly scheduled, open discussion meetings 
to discuss concerns and make reevaluations 

1 .2.4 Local problem-solving meetings (group and 
individuals) in which all concerns are honored 
and received 

Tools: Ongoing written needs assessment by both 

involved groups 



Forces: 



33 



Evaluation 
Strategies: 



1 . RRC representative contacting and leading 
all governmental and private organizations 
concerned with services for the severely, 
multiply handicapped; i.e., state board of 
education, organized consumer representa- 
tives (ARC, UCP, ACLD), Health Department, 
Vocational Rehabilitation (adult services) 



1. Compile statistics on meetings: i.e., number 
of meetings, number in attendance, etc. 

2. Transcription of tape recordings of meetings 
and interaction analysis 



34 



3. Attitude survey 

4. Parents' and professionals' concerns are 
expressed in a combined list 

Evaluation 

Needs: 1 . Interaction analysis scales, e.g., Flanders, Hill 

2. Questionnaires, e.g., "Were you able to 
express yourself?" "Did people listen to 
your concerns?" 

GOAL 2.0 TO PROVIDE AND COORDINATE COMMUNITY 
BASED, PARENT-RELATED SERVICE PROGRAM 

Strategy 2.1 Develop and establish an interagency committee 

serving the handicapped 

Tactic 2.1 .1 Determine needs of the handicapped 

2.1 .2 Determine available services and define 
responsibilities 

2.1 .3 Develop meaningful and achievable programs 

2.1 .4 Make interagency participation part of the job 
description 

Strategy 2.2 Develop and establish an advisory council to the 

interagency group consisting of parents (consumer 

Tactic 2.2.1 Interagency recruitment of parent participants 

on advisory council 

2.2.2 Advisory council meetings would be open to 
consumers of agency services 

2.2.3 A rotating member of the advisory council would 
attend meetings of the interagency committee to 
share their identified needs 

2.2.4 Technical assistance to advisory council would 
be provided by rotating members of the inter- 
agency committee 

Strategy 2.3 Plan and develop a service coordinating agency 

Tactic 2.3.1 Establish an independent task force 

2.3.2 Define the role of the coordinating agency 

Tools: 1 . Research existing models for service 

coordination 

2. Funding 

3. Directories 

4. Service Clubs 

5. Media 

6. Speak-ups 

7. Survey— needs assessment 

8. Advisory council to design role of and 
appoint coordinating agency 



Forces: 1. Service organizations 

2. State agencies 

3. Legislative influences 

4. University related facility 

5. Special education personnel 

6. Health services 

7. Consumers 

8. Media 



Evaluation 
Strategies: 



Evaluation 
Needs: 



GOAL 3.0 

Strategy 3.1 

Tactic 3.1 .1 

Tools: 

Tactic 3.1 .2 
Tools: 

Strategy 3.2 

Tactic 3.2.1 

Tools: 

Tactic 3.2.2 
Tools: 



Forces: 



35 



1 . Compare data of served and unserved 
children (initial — 1 year) 

2. Compare data of inappropriately served 
children (initial— 1 year) 

3. Are parent/child-related services established? 
(initial— 1 year) 



1. Advisory council will evaluate parent-related 
services 

2. State, local surveys (e.g., ACCESS) 

3. Oregon model for service coordinator 

TO PROVIDE FOR AND INCREASE PARENTAL 
UNDERSTANDING, KNOWLEDGE AND SKILLS 

Develop a communication coordination center 

Secure funds 

1 . Establish a ways and means committee to 
raise money 

2. Write a proposal of goals of the center 

Develop a facility, staff and resources 

1. Secure a building and equipment 

2. Obtain a list of local and state resources and 
secure commitments to cooperate and share 

Develop systematic parental involvement 

The center will have information available 

1 . Brochures, newspapers, radio and television 

2. Talks: speakers would be parents, teachers, 
psychologists, legislators, lawyers and doctors 

To outreach into the homes 

1 . In-service training by parents, teachers 

2. Brochures, letters 

3. Service organizations 

4. Recruit parent volunteers into special 
classes— (paraprofessions, coordinators) 

Those in existence: 

1 . Private foundations, service agencies 

2. Civic: Jaycees, Lions, Rotary, etc. 

3. Local media 



Evaluation 
Strategies: 



4. Students 

5. Professional: medical, legal, educational, 
therapeutic 

6. Parents 
Need to create: 

1 . Temporary coordinator to establish 

agency board consisting of representatives 
from established forces 

a. Coordinator and executive director 
appointed by agency board 

b. Fund raising committee 



(Formative and Summative) 

1. Criterion-referenced model based on per- 
formance objectives for parents and children 

2. Surveys, i.e., questionnaires and interviews 

3. Standardized tests 



Evaluation 

Needs: 




1 . Develop a questionnaire to evaluate quality 
and knowledge of current services to parents; 
questionnaire to be sent out before and at 
end of the year 

2. Criterion-referenced instruments for parents 
and students 

3. Standardized tests 

4. Interview with parents on random samples 



GOAL 4.0 TO ARTICULATE AND ENABLE PARENT 
ROLES IN SERVICE DELIVERY 

Strategy 4.1 Early childhood training, using the family in 

primary intervention 

Tactic 4.1 .1 Professional team goes to the home, develops 

and carries out infant stimulation program with 
the family 

Tools: 1. Packaged materials 

2. Diagnostic equipment and expertise 

3. Skills for observing child 

4. Skills in interpreting findings to the family 

5. Skills in designing home training programs 

In-service workshops for parents 

Continuous training utilizing family participation 

In-service workshops for parents 

Ongoing evaluation system 

Professional team goes to the home, develops 
and carries out infant stimulation program with 
the family 

Strategy 4.3 Parent organization and participation 

Tactic 4.3,1 Instigate parent group and parent-professional 

group 



Tactic 4.1 .2 


Strategy 4.2 


Tactic 4.2.1 


4.2.2 


Tools: 



Tools: 1 . Constitutions for parent groups 

Tactic 4.3.2 Student-related staff policy of open invitation 

to observe and participate 

Tools: 1 . Printed staff policies related to program 

personnel 
2. Publicity: television, radio, newspapers 

Strategy 4.4 Open communication between parents and 

professionals 

Tactic 4.4.1 Active resource pool of specialists and 

resources— lawyers, legislators, etc. 

Tools: List of names of specialists 

Tactic 4.4.2 Instructional materials 

Tools: Pre-packaged materials and programs and an 

open appointment book 

Tactic 4.4.3 Practicing receptivity and honesty between 

parents and professionals 

Tools: "Help-line"— available telephone services 

Forces: 1. Interdisciplinary team: nurse, family 

doctor, therapists, psychologists, medical 
specialist, social worker 

2. Home school program coordinator 

3. Families 

4. Teachers 

5. Workshop directors 

6. Public relations media 

7. PTA or ARC team groups and other parent 
groups 



Evaluation 
Strategies: 



Evaluation 
Needs: 



1 . Observation 

2. Measure of parent effectiveness with child 
in all areas of skills: social, educational, etc. 

3. Measure effectiveness of groups' accomplish- 
ments 

4. Measure of parent and professional growth 



1 . Parent conferences 

2. Tests: vocational evaluation,(VineIand), 
PACE circular,(Kephart) 

3. Pre- and post-questionnaire for program 

4. Teacher inventories 

5. Family observations and charting 

6. Quantity and quality of parent involvement 



37 



GOAL 5.0 TO INCREASE PROFESSIONAL UNDER- 
STANDING, KNOWLEDGE AND SKILLS 

Strategy 5.1 Design and implement state-wide educational 

programs to increase basic knowledge of severely 



38 



handicapped conditions on the part of all 
professionals who deal with parents 

Tactic 5.1 .1 Determine the level of knowledge of professionals 

working with parents by survey inventories, 
information tests 

Tools: 1. Survey inventory 

2. Information tests 

Tactic 5.1 .2 Provide training for existing professionals 

working with parents 

Tools: 1. In-service training at regular professional 

staff meetings 

Tactic 5.1 .3 Develop or improve preservice training programs 

for professionals working with parents 

Tools: 1. Competency-based degree program with 

practicum experience 
2. Curriculum changes in training programs 

Tactic 5.1 .4 Develop professional standards for those work- 

ing with parents 

Tools: Coalition of parents and professionals to 

establish professional standards 

Strategy 5.2 Design and implement a state-wide program to 

increase specific skills of parent trainers 

Tactic 5.2.1 Identify skills needed by parent trainers 

Tools: Literature search 

Tactic 5.2.2 Develop a program and staff to teach those skills 

Tools: Competency-based degree program with 

practicum experience 

Strategy 5.3 Design and implement state-wide programs to 

increase acceptance attitudes of professionals 
toward parents and their severely handicapped 
children 

Tactic 5.3.1 Develop awareness of attitudes among profes- 

sionals and assess them 

Tools: 1. Gestalt group techniques 

2. Role-playing 

Tactic 5.3.2 Include experiential content in professional 

training 

Tools: 1. Regular practicum experience 

2. Role-playing 

Forces: 1. Organized parent groups 

2. Knowledgeable professionals retained by 




Evaluation 
Strategies: 



Evaluation 

Needs: 



state and local agencies 

3. Qualified trainers to work in college or 
university setting 

4. An advisory committee representing parent 
and professional organizations 

5. Professional lobbyist retained by parent 
groups to effect change in preservice 
training institutions 

6. Research specialist 

7. Management specialist, educational pro- 
grammer, technical competency specialist, 
information materials specialist, evaluation 
specialist 

8. Informed parent professional groups to 
communicate with professionals 

9. Professionals skilled in attitude change 
techniques, retained by parent groups to 
work with professionals 



1 . Measure change of behavior or professionals 
toward the target population— parents and 
severely, multiply handicapped children 

2. Assess parent knowledge, understanding, 
and skills 

3. Evaluate change in attitudes of professionals 

4. Evaluate change in professional knowledge 



1 . Parent survey 

2. Observation of professional behavior 

3. See needs for evaluation strategy no. 3 

4. Parent participation on training and other 
programs 

5. Professional involvement in community 
organizations and activities 

6. Survey of professional attitudes 

7. Test of knowledge and skills (criterion- 
referenced) 

8. Evaluation of change in monies expended 
for services to severely, multiply handicapped 



39 




TIMELINES, BY STATE AND NATIONAL WORKSHOP GROUPS 



Participants in each of the four state workshops 
had the enormous assignment of trying to con- 
cretely apply the wisdom of the conference to 
the needs of their own state. The allotted time 
for this task was a meager 1 hour and 1 5 minutes. 
Yet this was a most necessary effort, even with 
such constraints. The national workshop (38 
participants representing 14 states and the Dis- 
trict of Columbia) sought to apply the decisions 
of the conference primarily to the federal struc- 
tures. Their work took the shape of recommen- 
dations and goals, instead of a timeline. 

All five workshops tried to limit their concern 
to a one-year period, with the states developing 
one-year timelines by quarters. It is important 
to underscore that even though more time was 
needed to fully complete this assignment, many 
of the recommendations are well articulated 
and valid, and should be taken seriously as 
starting points for service. As you refine the 
work here, remember that the thinking that led 
to these pages was concentrated, collective and 
intense. 

The information in this section appears in the 
words of those who participated. The entries 
were necessarily cryptic. For a complete under- 
standing of the tactics or strategies listed, refer 
back to the information generated in the speci- 
fic workshop. The goals, strategies and tactics 
from the workshop— plus the timeline— chart the 
steps the participants would like to take in their 
own states. Perhaps some of these first steps in 
improving services to the severely, multiply 
handicapped have, by now, been taken. 





TIMELINE - IDAHO 



42 



SPRING, 1974 (March-May) 


SUMMER, 1974 (June-August) 




1. SYSTEMATIC DELIVERY SYSTEM 






•State Department of Education will 


•The task force/advisory board will 




appoint a task force and/or advisory 


disseminate information regarding 




board composed of key people of 


this conference and information 




state and local agencies and groups 


regarding task force activities 




serving severely multiply handicap- 






ped children to develop or clarify 






Idaho's philosophy regarding service 






to severely multiply handicapped 






children. This task force/advisory 






board will also review rules and 






regulations affecting this popula- 






tion and current information regard- 






ing the needs of Idaho's severely 






multiply handicapped children 






2. IDENTIFICATION OF CONSTRAINTS 






•The governor should require each 


• Program reports and cost alloca- 




agency to provide a written document 


tion plans should be developed for 




(in directory form) that would list 


each agency or program relating to 




information on what is available in 


severely multiply handicapped 




federal, state, local funds; who is 


starting in July 




contact person, what projects can 


•Develop statewide coalition 




be included; what priorities exist. 


(regions, grass roots) to influ- 




This would begin immediately and 


ence bureaucracy 




be an ongoing service 


July 1— Identify groups 




•Workshops to train state profession- 


August 31 — Form ad hoc committee 




als in grant writing-by regions or 


to assemble leaders who can have 




on a state basis beginning in April/ 


influence 




May to be helpful before FY75 begins. 






• Have curriculum in colleges to 






assist special education teachers in 






multiply handicapped to use common 








5s 






• Focus on public awareness of needs 
and rights of the severely multiply 
handicapped 

• Have in-service training for pro- 
fessionals in four locations of the 






•Have on-going meetings of commit- 














3 OPTIONS FOR THE UNSERVED CHILD 






•Compile index of existing services 


• Evaluation criteria composed by 




• have SEA publish index 


task force with input from: adminis- 




• Establish a Governor's Advisory 


trators, parents, teachers, other 





FALL, 1974 (September-November) 



• Conduct a census within local school 
districts, agencies and institutions 
serving severely multiply handicapped 
children of served and unserved 
target population 



> 



(See Note) 






43 



•Assessment team to be appointed by 

task force 

•To retrain on-staff educators and^— 



*Arrows indicate a tactic(s) are to 
be continued into next quarter(s) 



WINTER, 1974-75 (December-Fet uary) 



•Advisory board/task force will act 
as catalyst to search out available 
funds to initiate at least one pilot 
program in Idaho to improve existing 
services to severely multiply handi- 
capped children and at least one pilot 
program to initiate services to 
severely, multiply handicapped children 
previously unserved. Provide techni- 
cal assistance to this project and 
disseminate effectiveness of pilot 
programs 

•The advisory board/task force will 
investigate the feasibility of a 
follow-up workshop on severely handi- 
capped children 



> 



■^> 



44 



SPRING, 1974 (March-May) 


SUMMER, 1974 (June-August) 




Committee for the Multiply Handicapped 


professionals, public and private 




• Mount a need assessment of manpower 


agency representatives, politicians. 




requirements for severely multiply 


and state specialists 




handicapped 


• Obtain training resources from 




• Find out what policy exists at all levels 


existing institutions, agencies, 




• get report of non-written guide- 


professionals 




lines 










• get written rules from all levels 


•assign responsibility 




• Identification of needs 


• use consultation for analysis 




• identify served and non-served 


of data 




severely multiply handicapped 


•funding 




population 


•write out plan 




• identify facilities 






• identify manpower 






4. WHAT IS RELEVANT EDUCATION 






• Review possible locations (existing) 


•Compose curriculum guides from 




for demonstration center 


surveys for severely multiply 




•Disseminate information through 


handicapped 




existing conference 


• Increase mandatory training re- 




•Pool existing data relative to 


quirements for certification to 




severely handicapped/multiply handi- 


include extensive practicum 




capped in state 


• making it mandatory that preser- 




•Have state department survey exist- 


vice students be given opportun- 




ing national programs 


ity and obligation to develop 
competencies with severely 




•Have state department conduct 


handicapped children 




in rcf\,\^a -foj^|-|p[- triininn 


5v 




• spring workshop in Idaho 


&* 




• definition of multiply handi- 






capped/severely handicapped 






(BEH definition) 






• programs for severely handi- 






capped/multiply handicapped 






development 






•training 






• representatives: teachers- 






regular and special education, 






medical, universities, LRCs, 






RRCs, public school adminis- 






trators, parent associations- 






ARC, PTA, CEC, legislators, 






psychologists, social workers, 






speech therapists. Department 






of Environmental and Community 






Services. 









FALL, 1974 (September-November) 


WINTER, 1974-75 (December-February) 


recruit and train parents, parapro- 






fessionals and volunteers 


•Accrediting team to be appointed by 
task force and given authority from 
Governor's Advisory Committee to make 
recommendations for additional funding 


„ 


^ 


and to compile a list of accredited 
facilities 




-£> 






• Recruit trained educators for the 






severely multiply handicapped 
• Having results of the needs assess- 
ment apply pressure on administrators, 
school boards, community groups and 






parents 




• Begin establishment of demonstration 


• Demonstration center is operating 




center 


• Conduct evaluation 




•State coordination for severely 


state coordinator for all severely 




handicapped/multiply handicapped 


handicapped/multiply handicapped 




classes and curriculum so as to pre- 


is responsible for referrals, continuity 




serve a program which adequately ful- 


of programs, assured services for all 




fills the needs of state (one good 


infant to schoolage program (Head Start) 




program-not three bad programs) 


regional demonstration centers 




•Awareness campaign should be conducted 


in-service workshops: joint demon- 




•Survey existing legislation and 


stration programs 




draw up proposals for new legisla- 


• Skill orientation practicum 




tion 


(specific training program for 




• Determine specifications and 


severely handicapped/multiply 




competencies in severely handicapped 


handicapped) 




/multiply handicapped programs 


•Continuing adult education-adult 




• survey state needs: RRCs, SEAs, 


welfare, sheltered workshops, 




LEAs, state associate centers 


rights and protection (Department 




• survey national existing programs 


of Environmental and Community 




LRCs, RRCs, DDDs, state associate 


Services, Welfare and Vocational 




centers 


Rehabilitation) 




• delineate training and instruc- 


• Funding (Designate appropriate 




tional programs 


ratios, 1/4 or 1/8 with/without 




competencies 


aide, or fund demonstration units only) 




objectives 


• Certification standards: define 




curriculum: academic, 


target population, ratios, prac- 




social and vocational 


ticum, academic, competency based criteria 




methods: custodial versus 


• New endorsement for severely handi- 




behavioral 


capped/multiply handicapped 




measurement: accountability 


• no mentally retarded endorse- 




•Designate sources for specifica- 


ment valid for severely handi- 




tion of competencies: parents, 


capped/multiply handicapped programs 




universities, public schools, 


• interim status to present 




teachers, agencies, administrators. 


mentally retarded endorsements 




state department, institutions. 


(3 years): pretraining and in- 




vocational rehabilitation, RRCs, 


service training for all men- 




LRCs, DDDs 


tally retarded endorsements 




desiring severely handicapped/ 


45 




multiply handicapped endorsement 



L 



SPRING, 1974 (March-May) 


SUMMER, 1974 (June-August) 


5. PARENT EDUCATION THEIR ROLE 

•ARC will identify community based 

parent organizations which provide 

services 

♦ Request DDD council to coordinate 

meeting of state-level organizations 

and ask that they make commitment 

for cooperation 


• Have groups redefine their organi- 
zations in order to cooperate more fully 
fully with others 

•Give guidance to group meetings 
locally: recommend that the 
state department of education gives guidance 
•Utilize all parent and professional 
groups in the process of reaching 
consensus on defining clear objectives 



46 



FALL, 1974 (September-November) 


WINTER, 1974-75 (December-February) 




• Progress report and evaluation 



47 



TIMELINE - MONTANA 



48 



SPRING, 1974 (March-May) 


SUMMER, 1974 (June-August) 


1. SYSTEMATIC DELIVERY SYSTEM 




•Establish attitudes and philoso- 


•Form task force committee on 


phies 


legislation 


•Identify population 


•Identify program needs and de- 


•Identify personnel responsible for 


termine gaps 


implementing overall goal 




• Identify existing programs, person- 




nel, facilities, funds, etc. 




2. IDENTIFICATION OF CONSTRAINTS 




• Inservice training 


•Publish and disseminate priorities 


• Set priorities for local areas 


to defined locale 


• Provide sectional meetings in 


•Contact local volunteer groups 


professional disciplines for se- 


•In-service special and regular 


verely handicapped 


teachers concerning potential limi- 




tations of severely handicapped 


• Identify state-wide communication 


•Develop accountability evaluation 


process 


summary 


•Evaluation of function of committee 


•Composition of group presentation 




for fair and equal representation 




in services 


3. OPTIONS FOR UNSERVED CHILD 




• Determine needs & population 


• Identify new services, agencies 


• Outline program and goals 


and facilities available 


• Sell program to the Board 


•Include parents and other interest 


• Obtain indexes of public and 


groups for needs, etc. 


private sources of funds and man- 


•Design general program for funding 


power 


and acceptance 


• Discover related agencies 


• Hire professionals 


• Evaluate old programs 


• In-service training of teachers 


• Establish effective lines of com- 


aides, parents, etc. 


munication so that no program 


• Design specific programs - goals 


overlap exists 


and means for evaluation 


•Identify constraints 


• Arrange for transportation and 


• Incorporate new patterns into ex- 


housing 


isting systems 


• Design and maintain a public 


• Determine existing written/un- 


relations campaign 


written policies and rules 




4. WHAT IS RELEVANT EDUCATION? 




• Identify a prime mover to set up 


• Review for university requirements 


community advisory committee 


and certification. Have sophomore 


(resource Ryan Act— California) 


teacher experience 


(information output) 


•Secure Title VI and Voc. Ed. 


•Interaction between University and 


funds 



49 



FALL, 1974 (September-November) 


WINTER, 1974-75 (December-February) 


•Design program for delivering 

services 

•Specify personnel responsible 

for implementing specific program 


• Implement program 


•Survey current attitudes and needs 

• Identify professionals 

• Identify resources that may con- 
tribute to awareness campaign 

• Develop multi-media presentations 

• Dissemination of information in 
medical offices 

• Fiscal accountability (initiate) 

• Identification of interested 
groups 


•Establish leadership for conference 
•Prepare proposal for deans 

•Locate representatives in helping 

services 

•Utilize existing volunteer agencies 

Organize events to demonstrate 
severely handicapped 
•Identify funding agencies - and 
grant writing specialists 
•Form conference for assembling 
committee leaders 


• Implementation 

• Include volunteers and provide 
for their training 

• Continue communication with simi- 
lar groups/P.R. with population 
served - "show and tell" parent- 
teacher conferences; parents day 

• Home visits 
•Consultants 


• Evaluate progress of program 

• Plan for improvements in program 
•Accreditation 

• Reapply for funds 


• Practicums (then workable) 
•locations 

•maximum exposure to institution 
and classroom situation 

• Live-in situations 





50 



SPRING, 1974 (March-May) 


SUMMER, 1974 (June-August) 


public school systems (effective 


• Set up model program for dem- 


working teams for evaluation pur- 


onstration funds 


poses ) 




• Develop state standards to reflect 


•Task force to evaluate teacher 


needs 


competency (parents, state, uni- 




versity, teachers and local 




personnel) 




•Set up national standards for 




competency and certification 




•offer provisional certification 




and alternate licenses for semi- 




professionals 




• Establish ratio standards 


• Improve and develop instructional 


•Cataloging existing professional 


curriculum 


agencies at national, regional. 


•Community Advisory Committee 


state, district and city levels 


(information output) 




(administration awareness) 




• Locate manpower pool and get on 




mailing list 




5. PARENT EDUCATION: THEIR ROLE 




• Develop a survey tool 


•Determine available services in 


• Implementation of survey tool in 


local areas 


needs assessment 


•Establish a visible community 


•Parent meetings to coordinate ef- 


based point of contact for parents 


forts toward consensus 


seeking services and information 


•Joint coordinated meetings between 


to include local, state, and na- 


parents and professionals to discuss 


tional levels 


parent needs 


• Invite key committed profession- 


•Solicit firm commitments towards 


als to help establish a means of 


cooperation between parents and 


information dissemination to other 


professionals in upgrading parent 


professionals 


education 


• Initiate involvement of parent 




and professionals in planning 




parent education 



51 



FALL, I974 (September-November) 


WINTER, 1974-75 (December-February) 





in institutions for teacher 




trainees 






•Begin developing regional computer 


•State library on teacher tech- 




center for severely handicapped to 


niques from other teachers (begin 




be used as teacher resource (by 


task analysis services here) 




subscription) Task analysis 


•This will become the demonstration 




services 


center 




•Regional inter-specialist team to 






consult with teachers, parents. 






dental, public health nurse, wel- 






fare, recreation, doctor (use intern 






help) 






• In-service 






•one free Friday afternoon a month; 






• plan ways to free teachers for 






•in-service training 






•Develop, implement, or improve 


• Evaluation of goals 




preservice training programs for 


• Critique of year's plan 




professionals working with parents 


• Initiate planning for the coming 




• Inservice workshops for parents 


year 




to provide skills in relating to 






professionals 






•To coordinate understanding and 






develop reciprocal involvement 






between parents and professionals 






•Cooperative planning and pro- 






gramming between parent and profes- 






sional 







TIMELINE - UTAH 



52 



SPRING, 1974 (March-May) 


SUMMER, 1974 (June-August) 


1. SYSTEMATIC DELIVERY SYSTEM 




• Promote discussion of issues among 


•Determine total personnel needs 


special educators, state department 


• Identify target: i.e., UEA, media, I 


officials, school-administrators, 


other agencies 


parents, and agency personnel 


•Identify service patterns 


• Articulate and prepare philosophy 


•Describe existing programs 


agreeable to those who will provide 


•Describe new programs needed 


and receive service 


• List existing facilities 


• LEAs will be responsible for iden- 


• Locate and establish additional 


tification of severely multiply 


facilities needed 


handicapped 


•Determine financial need 


•Organize publicity: awareness of 


•current financing 


intention to provide services 


•projected financial needs 


•Task force (service providers and 




consumers) review laws and regula- 




tions to determine if they permit 




state to act in accordance with its 




philosophy 




• recommend changes 




• inform parents, secure support 




• Identify specific responsibilities 




of each person involved in services: 




SEA, LEA, legislators, institutions, 




parents, etc. 




2. IDENTIFICATION OF CONSTRAINTS 




• Systematic collection and dissem- 


• Form coalition of consumers and 


ination of available information 


providers 


for funding-to appropriate legis- 


•Ongoing legislative committee 


lators, state agencies, local gov- 


meets regularly with providers of 


ernmental units 


special services 


• Professionals and parents share 


•Appoint more providers to decision- 


knowledge and techniques to jointly 


making boards 


determine priorities 


• Identify interested groups 




•Form conference for assembling 




leaders; develop ad hoc committee 




•Adopt curriculum and new views to- 




ward severely multiply handicapped 




that incorporate common terminology 




•Clarify existing funding mechanisms 




•Increase opportunities for inter- 




agency cooperation 



53 



FALL, 1974 (September-November) 


WINTER, 1974-75 (December-February) 


•Implement program for the severely 


•Develop means of assessing capabili- 


multiply handicapped 


ties of services to meet needs 


•Delineate preliminary goals based 


systematically 


on needs assessment and present in- 


•Determine if all severely multiply 


formation to parent and professional 


handicapped have been identified 


groups for refinement 


•census 


• Develop alternative models for 


social services and others 


systematic delivery system 


• Determine if individual needs of 


• Review existing delivery models 


severely multiply handicapped children 


•Make recommendations for pilot 


are being met 


programs 


•criterion measure 


•provide technical assistance for 


•periodic evaluation 


•implementation of pilot programs 


•Update needs assessment 


•Lobby for legislation 


•Evaluate year's progress 


•mandate 




•funds 




• Make provisions for other funds 




• Establish system for identifying 


• Conferences to set priorities for 


severely multiply handicapped chil- 


local areas concerning severely 


dren—in and out of school— not re- 


multiply handicapped 


ceiving appropriate services 


•LEA special education personnel, in- 


•Provide resource personnel who can 


formed of services for severely, mul- 


advocate for existing programs 


tiply handicapped, will inform others 


• In-service training for inter- and 


(special and regular education teach- 


intradisciplinary staff 


ers, ancillary personnel) 


•Recruit and select in-service 


•Include churches in campaign to in- 


training team 


crease awareness of handicapped as 


•Survey professionals' current at- 


human being 


titudes and needs 


•Arrange presentations to civic groups 




to include demonstrations of abilities 


•Conduct local workshops to develop 


of severely handicapped children 


information and action on 




•knowledge of issues 


•Utilize handicapped students as 


•lobbying 


teachers and aides 


•publicity (encourage individuals 


•Utilize elementary school peers as 


•to write congressmen; get commitment 


"special friend" or advocates for 


•for individuals to work unitedly) 


severely multiply handicapped children 


•Include medical profession in campaign 




for awareness of the handicapped as 




human beings 





54 



SPRING, 1974 (March-May) 


SUMMER, 1974 (June-August) 




3. OPTIONS FOR UNSERVED CHILDREN 
• Determine what policy exists at all 






•Design proposal to change attitudes 




levels 


•assign responsibility 




• Identify resources 


•use consultant to analyze data 




• identify agencies providing ser- 


•funding 




vices to severely multiply handicapped 


• write plan 




• compile registry of human re- 


• Using results gained from spring __ 




sources 


activities, apply pressure on admini- 




•Identify needs 


strators, school boards, community 




• served and unserved multiply 


•groups and parents 




handicapped 


•Designate a person to design a 




•facilities 


model by reviewing existing models, 




• manpower 


•persons 




•Survey 25 selected citizens, 25 
school administrators and 10 in- 










structional staff personnel to de- 






termine positiveness, acceptance and 






commitment as defined in question- 






naire toward severely handicapped 






•Survey school boards and USBE 






•Contact USBE for list of agencies 






•Obtain published directories 






•Contact parent groups 






•Contact related professions 






•Saturate media 






•Questionnaire sent home with school 






children to determine identification 






of all children 






4. WHAT IS RELEVANT EDUCATION? 






•Follow-up conference; detail strat- 


•Detailed plan mailed to conference 




egies by committee comprised of 


participants on how coordinated re- 




representatives from State Board of 


lationship will be established in 




Higher Education, USBE, LEAs (Prime 


following areas: 




mover: MR Specialist, USBE) 


• practicum experience 




•Consumer groups publicize issues 


•demonstration center 




•USBE representative forms a Task 


•preservice training 




Force of USBE, university and public 


• inservice training 




school personnel 


•advisory committee 




•RRC develop national manpower pool 


•minimum list of competencies 




with agencies dealing with severely, 


• all severely multiply handicapped 




multiply handicapped on mailing list 


• children should have in education 




•Agencies/State develop computer 


• Regional information group formed 




centers of information on severely 


•Task Force review 




multiply handicapped, using federal 


•contact BEH for funding information 




funds 


• contact professional standards project 




• Extensive information/literature 


• input from all levels and types of 




dissemination in university student 


• interested parties (social workers, 




teaching programs 


• physical therapists, etc.) 




•Area and regional resource centers 


•Task Force designs flexible certi- 




and media center disseminate accum- 


fication program for paraprofessionals 




ulated information to districts 


and professionals 




•Information obtained from ERIC 


•Task Force collects information for 





55 



FALL, 1974 (September-November) 



•^> *(See Note) 



• Demonstration centers identified 
and operating 

•Practicums for in-service training 

initiated 

•Advisory committee holding hearings 

on program improvement 

• Implement strategies to bring all 
teachers to minimum competency level 
•Task Force finishes design for 
flexible certification program and 
definition of appropriate education 
•Workshop of concerned personnel to 
review progress 

•List of professional organizations 
are funneled to USBE and sent out 
to all LEAs, classes, etc. 
•Coordination of interdisciplinary 
abilities of various specialists (e.g., 
speech pathologists, physical 
therapists) and use existing agencies 
for coordination 

•Organize meetings/seminars where 
teachers share effective ideas 



WINTER, 1974 (December-February) 



• Retrain and train current profes- 
sionals 

•Obtain copies of written policy 
statements 

•Evaluate at least 15 agencies 
which provide services 
•Evaluate services enacted through 
the year 



• Hold accountability conferences 

• progress reports from all programs 
•implemented during the year 
•evaluate and develop new strategies 
•and a new timeline 

• Begin implementation of model pro- 
grams in different parts of the state 

• Begin legislation 



'Arrows indicate a tactic(s) are to 
be continued into next quarter(s). 



56 



SPRING, 1974 (March-May) 


SUMMER, 1974 (June-August) 




disseminated to individual teachers 


definition of appropriate education 




• School structure organized so staff 


• LEA personnel responsible to col- 




can receive in-service training. 


lect and disseminate information to 




• teachers hired for extra days 


teachers on regular basis, and tell 




beyond regular year 


teachers how to implement 




• V2 day per week for in-service 


•Prepare demonstrations on various 




• 1 or more visiting days per 


skills for presentation in districts 




year for professional growth 


and agencies, with films, cassettes 




• use of substitute teachers 


• LEAs develop task analyses for 




• Professional organizations develop 


various skills to be compiled by 




cooperative effort to share ideas: 


RRC or USBE for dissemination to 




CEC, UARC, UEA, etc. 


all teachers who need information 




• Develop mailing lists for agencies 


•Appoint state-level supervisory 




who produce ideas, materials, etc. 


personnel to coordinate vocational 
training in rural areas 




5. PARENT EDUCATION: THEIR ROLE 






•Contact USBE and State Social 


•Fund raising activities developed 




Services to appoint a 3 to 5 member 


and implemented by committee 




steering committee 


•Staffing-facility planning commit- 




• steering committee will contact 


tee planning activities for center; 




lay organization who would appoint 


will make recommendations to steer- 




members to two committees: fund 


ing committee for center coordinator 




raising and staffing-facility plan- 


•Mail competency questionnaires to 




ning committees 


target population 




• Identify target population 


•Tabulate and evaluate results 




• Committee of professionals select- 


• Disseminate evaluation information 




ed by USBE Teacher Certification 


to professionals involved for pre- 




?iHm i niQtrPitnr ■ rnmmittpp will c\p- 






OUIIIIIII0LIC1I.UI , IrL/IIIIIIlL LCC Will \ * C 

fine parent trainer standards 


• Committee will develop professional 




• Prepare inventory to assess pres- 


standards 




ent knowledge of professionals 






working with parents 






•Parent trainers, parents and 






professionals submit competency 






list as to elements trainer needs 






to be effective 






•Combine lists and formulate one 






competency list 






•Review available data on needs of 
severely handicapped as seen by 










professionals and parents 






• Determine need for additional date 






•Develop survey form to be sent to 






consumers and professionals (form 






indicates needs and priorities) 


• Educate governor, office of child 




•Have governor appoint state direc- 


development and DDD to a master 




tor of developmental disabilities 


plan for about 14 developmental 




• Develop a developmental disabili- 


teams 




ties agency on each of the state's 


•Develop master plan for develop- 




regional levels 


mental teams 




•Develop the parents advisory 


• Locate funding 




council 


•Interface existing programs as 
nuclei 




(continued next column) 







57 



FALL, 1974 (September-November) 



• Disseminate survey on needs and 
priorities 

•Analyze returned data 

• Hire coordinator and staff; set 
up building; contact agencies; 
plan of action developed for center 
•Advisory or policy-making board 
established by steering committee 

• Begin to develop training modules 
for use in selected programs 



►Project Identification update 
•evaluate ability to meet identified 

needs 
•fill in gaps, using DDD agencies 

and advisory council 
•begin implementation of plan for 

developmental teams for state 

• select personnel 

• purchase equipment 

•hold parent workshops in target 
areas 



WINTER 1974 (December-February) 



•Begin small group meetings of pro- 
fessionals and consumers to react to 
and reevaluate check lists 

• Implement plan of action for center 

• Pre-test attitudes 

• Implement training modules 
• experiential content 
•formal instruction 

• Begin to develop a paraprofessional/ 
professional certification for parent 
training for state (USBE Instructional 
Support Services Administrator) 



> 



TIMELINE - WYOMING 



58 



SPRING, 1974 (March-May) 


SUMMER, 1974 (June-August) 


1. SYSTEMATIC DELIVERY SYSTEM 




• Promote discussion of the issues 


• Delineate primary goals (based on 


among special educators, state 


needs assessment) and present to 


department, school administrators, 


parent and/or professional groups 


parents and other agencies. 


for refinement 


• Prepare philosophy agreeable 


• Review existing delivery models 


to those providing and receiving 


• Recommendations for pilot programs 


services 


•Provide technical assistance for 


•Inquire about children with local 


implementation of pilot program 


welfare and service agencies 


•Promote chosen program 


•Organize a publicity program that 


• Lobby for enabling legislation 


will make people aware of intent 


• mandate 


to provide service and encourage 


•funds 


them to report existence of children 


•Provisions for other funds 


needing service 




•Task force committee review laws 




and recommend necessary changes 




• Have parents informed of legal 




issues in order to secure their 




support 




• Identify specific responsibilities 




of each person involved in providing 




service 




• state department, school dis- 




trict, legislators, institutions, 




parents, other agencies, parent 




and professional organizations, 




and federal people 




2. IDENTIFICATION OF CONSTRAINTS 




•Conduct survey of professionals' 


•Recruit and select the in-service 


current attitudes and needs 


training team 


• Identify by national, state, local 


•Technical assistance people as desig- 


existing resources 


nated will develop a package of aware- 


•Conduct a workshop to identify 


ness materials (multimedia, litera- 


technical assistance people in the 


ture, demonstration training, etc.) 


state or who serve the state 




• Department of education plan and 


• Establish a communication process 


conduct a series of workshops with 


that will insure mutual understanding 


appropriate agencies, administrators 


of the program, the target group. 


teachers, fiscal managers, evalua- 


the method of reaching goal 


tors, citizens and handicapped 


• Develop tools such as program or 


persons 


activities report; for fiscal ac- 




countability develop a cost alloca- 




tion plan, line items 


• Identify groups interested-order 


• Form coalition of interested groups, 


of contact: citizens, ARC; LEAs; 


consumers and providers together 


CEC, professional groups; SEAs 


• Increase number of providers on 




decision-making boards 



59 



FALL, 1974 (September-November) 


WINTER, 1974-75 (December-February) 


•Identification of target population 


• Have all severely handicapped been 




•LEAs 


identified? 




• other agencies 


•Census 




• media (electronic and print) 


• Social Services and other 




• Identification of existing person- 


•Are individual student needs being met 




nel by discipline 


•delineation of assessment tool 




• survey LEA and SEA 


(criterion measure) 




•survey other agencies 


• delineation of timelines (previous 




Determine training needs 


evaluation) 




What programs do we need 






• Describe existing programs 


• Needs assessment update 




•Describe new programs needed 






•list existing facilities 






• additional facilities needed: 






recommend location and estab- 






lishment 






•Costs 






• current financing 






• future financing needed: 






projected 






• Establish leadership for conference 


•Contact all relevant agencies to 
establish date and secure their 
participation 




• Designate within the state depart- 


Inform direct service education people 




ment of education persons who will 


medical doctors, other professional 




present to LEAs, etc. the described 


disciplines that serve severely multy- 




package of materials. 


ply handicapped citizens, parents, 
civic groups, volunteer groups (e.g., 
high school programs, church groups) 




• Designate specialist in grant 


•Convince funding sources of the need 




writing 


to modify strategies which prove inef- 
fective in accomplishing stated objec- 
tive 




• Form conference for assembling 


• Establish ongoing legislative commit- 




leaders, development of an ad hoc 


tee which meets regularly with provid- 




committee. 


ers of special services 





60 



SPRING, 1974 (march-May) 


SUMMER, I974 (June-August) 


3. OPTIONS FOR UNSERVED CHILDREN 




• Evaluate present demonstration 


• Submit proposed legislation to 


project in Casper schools 


state department of education 


• Report evaluative findings from 


administrative council 


the Casper project and recommenda- 


• Submit approved legislation to 


tions for state-wide program to 


attorney general for legal editing 


state board of education 


• Submit proposed legislation to the 


•Draft legislation re: severely, 


state board of education 


multiply handicapped class size 


• Present the state board of education 


proposal 


tentative policies to be used with 




proposed legislation 


4. WHAT IS RELEVANT EDUCATION 




•Appoint a committee to explore the 


• Review programs and literature 


competencies needed 


concerning curriculum 


•Hire a consultant with expertise 


• Establishment of a demonstration 


in the areas of severely multiply 


center 


handicapped and task analysis to 




head committee established 




•Appoint committee to explore neces- 




sary changes in certification stan- 




dards 




5. PARENT EDUCATION THEIR ROLE 




•State department of education 


• Develop a state department level 


initiate small group meetings- 


staff and program to eliminate pro- 


local level: parents, professionals, 


fessional's deficiencies and to pro- 


combined, to determine mutual 


vide for skill improvement as 


objectives 


determined by survey instrument 


•State department of education 


•State department initiate locations 


devise and distribute a survey 


of training in the state that will 


instrument to collect consensus of 


provide experimental content 


objectives from meetings 


•Continue information, collection 


• Hold evaluation group meetings to 


and dissemination 


determine relative consensus 




• State department of education 




conduct a survey of current profes- 




sional skills, standards, attitudes 




• Initiate center for information 




collection-dissemination state level 




•Explore fund sources 





61 



FALL, I974 (September-November) 


WINTER, 1974-75 (December-Feb.) 


• File proposed legislative bill with 


• Meet with sponsors of the legislative 


legislative services agency 


bill and appropriate legislative 




committees 


•Develop curriculum and strategies 


• Implement the teacher preparation 


for pre- and in-service preparation 


workshop at site where severely 


• Implement research on curriculum 


multiply handicapped children 


of the research center 


are available 




• Development of final curriculum 




employing consultant expertise and research 




acquired at demonstration center 


•Summer-trained professionals repli- 


•Articulate and enable parent roles 


cate training to parents at local 


in service delivery 


level 


• Professional team provides, develops 


•Establish local centers utilizing 


and carries out infant stimulation 


existing services and facilities 


program to families 


(i.e., mental health centers, county 


• In-service workshop 


libraries, clinics, schools) 


•Ongoing evaluation 


• Establish interagency committee 


• Instigate parent group; parent 


in center 


professional group 


• Establish advisory council of par- 


•Student-related staff policy of open 


ents to agency committee 


invitation to observe and participate 


•Develop meaningful and achievable 


•Activate resource pool of specialists 


programs to attract parents 


and others 


•Make interagency participation 


• Practice receptivity and honesty 


part of job description 


between parent and professional 


•To provide interagency recruitment 




of parents participation in advisory 




council 





GOALS BY TOPIC FROM NATION-AT-LARGE GROUP 



1. SYSTEMATIC DELIVERY SYSTEM 

GOAL1 DETERMINATION OF PHILOSOPHY, 

POPULATION TO BE SERVED, LAWS AND 
REGULATIONS, ROLES AND RESPONSI- 
BILITIES 




Spring: Promote discussion of the issues among profes- 

sional special education state department offi- 
cials, school administrators, parents of handi- 
capped children and personnel of other agencies 

Prepare a philosophy that is agreeable to those 
who will provide and receive services 

Summer: Inquire about children with local welfare or 

service agencies 

Organize a publicity program that will make 
people aware of the intention to provide ser- 
vice and encourage them to report the exist- 
ence of children needing service 

Fall: Recommend necessary changes 

Have parents informed of legal issues in order 
to secure their support 

GOAL 2 SPECIFY PERSONNEL, PROGRAMS, FACILI- 
TIES, COSTS 

Spring: Identification of target 

Summer: Identify existing personnel and determine 

training needs 

Fall: Describe existing facilities and determine addi- 

tional facilities needed 

Winter: Determine current financing and future needs 

GOAL 3 TO DEVELOP A MEANS OF ASSESSING THE 
CAPABILITY OF SERVICES TO MEET THE 
NEEDS SYSTEMATICALLY 

Spring: Check state annual school census records 

Check social services and other records 

Summer: Identify criterion and develop method for 

evaluation 

Fall: Provide for ongoing assessment to update 

needs 

Winter: Continued assessment 

GOAL 4 IMPLEMENT SERVICES FOR ALL SEVERELY 
MULTIPLY HANDICAPPED CHILDREN 



Spring: Delineate preliminary goals (based on needs 

assessment) 

Promote chosen program 

Summer: Review existing delivery models 

Make recommendations for pilot programs 

Promote chosen program 

Fall: Provide technical assistance for 

implementation of pilot program 

Winter: Lobby for enabling legislation 

Provisions for other funds 

2. IDENTIFICATION OF CONSTRAINTS 

Goals as they are rearticulated for federal government program 
planning: 

I. Establish a communication network 

for local-national and interstate in- 
formation exchange: e.g., program 
description, funding, etc. 

1 1 . Establish more clearcut lines of fund- 

ing responsibility and accountability 
as determined by grass-roots partici- 
pation in all program planning-short- 
range and long-range 

III. Establish research demonstration grants 
to develop an interdisciplinary curriculum 
for severely, multiply handicapped and an 
interdisciplinary in-service rotation program 

IV. Prepare a multi-media presentation on the 
severely, multiply handicapped targeted 
to all levels: e.g., civic groups, volunteer 
groups, schools, churches, etc. 

V. Require fiscal and program accountability 

VI. Allow for modification of specific program 

activities which prove to be ineffective in 
meeting stated program objectives 



63 



3. OPTIONS FOR UNSERVED CHILDREN 

Recommendations to the U.S. Office of Education: 

I. Systems Delivery 

A. Creation of new program delivery al- 
ternatives to stimulate and investigate 







1 . Services to rural areas 

a. A mobile mini-team to develop 
prescriptive programs for at-home, 
severely, multiply handicapped 
children and youth, and a team 
facilitator to train parents to 
implement the program 

ACTION — Funds to demonstrate 
how to use the above 
model in LEAs and 
intermediate service 
units. 

TOOLS — Suggested resources are: 

1) Telecommunication 
systems 

2) Existing training 
package such as 
Portage Project 

3) Video tapes 

2. Funds to develop models for an infor- 
mation retrieval system at the state 
level for human program resources for 
the severely, multiply handicapped that 
is regularly updated and locally complet 

B. Manpower — Best practices in use and training 

1 . Define teacher competencies 
required to teach severely, 
multiply handicapped children. 
Use the competency definition 

a. Force change in institutions of 
higher education training pro- 
grams preparing severely, multiply 
handicapped teachers 

b. Explore alternatives for teacher 
training: i.e., UAFs; voluntary 
agencies; state institutions, de- 
velopmental day care centers 

c. Stimulate research to determine 
empirically which competencies 
really result in child growth and 
development 

See No. A2 Retrieval Information System 
for resources of how to do 

C. Attitudes — Influence positive change in 
policy 

1 . Continue public relation efforts for 
acceptance and understanding and 



how to influence curriculum for 
general education training to result 
in a change in attitudes among regu- 
lar teachers 

2. To stimulate medical school training 
programs to change attitudes of 
physicians concerning the ultimate 
potentialities of severely, multiply 
handicapped children and youth 



4. WHAT IS RELEVANT EDUCATION 

GOAL 1 INCREASE COMPETENCE OF TEACHERS OF 
THE SEVERELY, MULTIPLY HANDICAPPED 

Strategy 1 BEH disseminate literature on significant work 

done to date and scheduled for the future 

Tactics: 1. Who is currently doing training and where: 

address pool 

2. Manpower pool of the experts in the field 

3. What funding is available to the state 

Strategy 2 By the end of 1st year, have developed system 

for subsidizing teachers, students and/or aides, 
host institutions for LEAs for 12-month work- 
study programs 

Tactics: Select training institutions that 

1 . Demonstrate practicum experience in 
field-based settings 

2. Propose cooperative institution/LEA 
demonstration centers for the education of 
severely handicapped 

3. Have a percentage of LEA training staff 
serving severely handicapped children 

GOAL 2 IMPROVE AND DEVELOP INSTRUCTIONAL 
CURRICULUM 

GOAL 3 DEVELOP STATE STANDARDS TO REFLECT 
NEEDS OF THE SEVERELY, MULTIPLY 
HANDICAPPED 

Strategy 1 Develop a national funding base to develop 

empirical data on essential competencies of 
teachers of the severely handicapped 



65 



5. PARENT EDUCATION: THEIR ROLE 

I. Parent inclusion (minimally 60%) and voting 

participation in awarding funds to all parent 
related service proposals— those parents to be 
representatives of established parent organi- 
zations 




II. Bi-annually BEH will be visited and evaluated 

by site visit teams composed totally of par- 
ents who are elected representatives of estab- 
lished parent organizations 

III. Annual Request for Proposal (RFP) site visits 
and evaluations will be made by site visit teams 
composed totally of parents who are elected 
representatives of established parent organi- 
zations 

IV. To provide funds specifically earmarked to 
encourage and support the development of 
parent training programs (RFP) 

1 . To state boards to financially support 
local parent training efforts 

2. To local agencies or organizations 
(dealing with handicapped) to finan- 
cially support programs (to include 
ARC, PTA groups, etc.) 

V. To support Closer Look in its efforts to make 

parents aware of existing services (specifically, 
media coverage of parent training materials) 

VI. To develop resource packets to assist 

groups in writing proposals to insure 
equal opportunity for all eligible organi- 
zations 



66 



IMPERATIVES RESULTING FROM TOPICS DEALING 
WITH THE SEVERELY MULTIPLY HANDICAPPED 



A wealth of information emerged from this con- 
ference. Parents, teachers and administrators— 
everyone at the conference— contributed insights 
and innovative ideas. The RMRRC staff members, 
who were distributed through all working groups, 
each recalled particular ideas that emerged time 
after time. From the dialogue and from the 
written workshop information, the following 
list of imperatives has been compiled: 

Attitude/Law: 

A. Develop a positive philosophy, attitude 
and commitment in order to build a 
delivery of services. 

B. Obtain legislated rights and services for 
the severely multiply handicapped, 
birth-to-death, with zero rejects. 

Identification: 

A. Establish responsibility and account- 
ability at program level for every 
identified severely, multiply handicapped 
individual. 




B. More effectively identify and appraise 
the needs of the severely, multiply 
handicapped population. 

Services/Structure: 

A. Establish inter-disciplinary: terminology 
and resource cataloging, leadership 
development, teacher training, curriculum 
sharing, working conferences to enhance 
attitudes, corporate decision making, 
lobbying, etc. 

B. Avoid inter-agency duplication, frag- 
mentation and bureaucratic weightiness. 

C. Establish comprehensive needs assessment 
of available service resources at every 
level. 

D. Reassess the compound and complex 
problems relating to serving the severely, 
multiply handicapped in rural remote 
areas. 

Training: 

A. Evaluate existing programs and develop 
pilot programs that include evaluation 
components. 

B. Identify methodology and toois so 
committed groups and individuals can 



68 



mobilize their concerns even when they 
are without adequate funds and programs. 

C. Obtain training resources that exemplify 
the current innovations and trends in 
special education. 

D. Develop appropriate incentives to 
recruit qualified severely, multiply 
handicapped instructors. 

E. Match preservice training with actual 
competencies needed to serve the 
whole person. 

F. Facilitate the development of training 
programs by joint efforts of LEA, SEA 
and university personnel. 

V. Parents/Community: 

A. Involve parents and providers of ser- 
vices (teachers, etc.) in all steps of the 
decision-making process, from the 
funding and coordinating agencies to 
actual service to the child. 

B. Raise the level of community awareness 
to acknowledge and enhance the LEGAL 
and PERSONAL rights of severely, 
multiply handicapped and parents. 

C. Train the family unit so that parents 
and siblings can perform early inter- 
vention. 

D. Develop alternatives for respite care 
and crisis intervention. 

VI. Communications: 

A. Extensively permeate the media as a 
means of improving services for the 
severely, multiply handicapped; improve 
communication and cooperation of 
those charged with dissemination of 
information to the individual at every 
level. 

B. Provide a structure and methodology to 
foster open communication between 
professionals and parents of severely, 
multiply handicapped. 

VII. Funding: 

A. Develop a clearer image and method of 
identifying, utilizing and expanding 
public and private funding and service 
sources. 

B. Encourage cooperation in fund sharing 
and service interaction. 



SPEECHES 



KEYNOTE ADDRESSES 



THEMATIC STATEMENTS 



WEDNESDAY MORNING KEYNOTE ADDRESS 
PAUL THOMPSON 



70 



Thank you, Judy. I am delighted to be with you 
today and particularly honored to be here representing 
Dr. Martin and to extend to you his very sincere 
greetings. He was delighted at the outset when he 
learned that the conference was being planned, and, as 
|udy has indicated, has keen interest in this field. 
Unfortunately, because of the nature of his position- 
being in such a viable spot in the national scene for 
education of all handicapped children— he must be 
immediately on the scene when urgencies arise. He 
has to extend himself to areas of severe need and so 
we might say that he is on call almost twenty-four 
hours a day in defense of the handicapped child. 

The comment has been made, and rather appropriately 
so, that a prophet is not without honor save in his own 
country and his own home. So when Dr. Martin 
asked if I would stand in for him at this occasion, I 
recognized that that would be a problem here. I 
visioned in my mind how this might appear in the 
local papers. It probably would read something like 
this as a caption: "Native Son Named Severely 
Handicapped Head." And then as a byline to this 
great headline, it could have read: "In the other- 
wise turbulent sea of recent bureaucratic blunders, 
recent selection of a leader for severely handicapped 
children and youth termed a natural." 

Now I would like to address in a rather oblique manner 
at the beginning the topic that Dr. Martin was assigned. 
The topic was "What Should Federal Education Policy 
Include for Severely Handicapped Children?" I was 
very delighted, and I should say, in most sincerity, 
that this is one of the most significant conferences to 
deal with the specific topic of severely handicapped 
that has been held anywhere in the United States. 

Recently, after being called to the position as 
chairman of a task force in the severely handicapped 
programs, I was delighted to find out that one of the 
significant things would be happening in my home 
state, so I signify this as being one of the very early 
and very significant steps which most certainly will 
have a pronounced effect nationally. It may be 
considered by you as a regional event, but the dimen- 
sions of this are much more far-reaching in scope than 
the confines of this region. So, I commend you. 

Now, I would look at the conference objectives in 
this light. It's definitely a working conference to 
deal with specific issues and, in this regard, to take 
within yourselves a survey of the needs of children 
whom you may call severely handicapped. Then you 
would be making a study within your resources: What 
are the available sources of funds? What are the 
available strengths in manpower that you have at your 
command? Then you would be in the process of 
developing long-range and short-range goals to impact 
the educational activities and training activities of 
this type child. And then you would be looking for 
the development of incentives and the skills that need 
to be included in the capabilities of individuals who 
bring positive impact on this type of child. 

Now, where does the national picture fit in all of 
these? Possibly it would be well to approach this by 



looking at the initial inception and reasons for form- 
ing BEH, the Bureau of Education for the Handicapped. 
Quite some years ago, in 1 965, the nation's lawmakers 
took a concerted look at the needs of children who 
they termed disadvantaged. And, as a result of much 
discussion and much controversy, there emerged the 
first major act of the Congress to impact into the needs 
of the disadvantaged child. And, following closely, was 
legislation enacted to direct attention to other areas 
of those who could be considered disadvantaged. 
Very shortly after the passage of what we now know 
as Public Law 89-10, the same Congress convened 
again to consider amending their work. This is one of 
the few incidents in history where the same Congress 
recognized wherein they had fallen a little short. I 
think this is quite significant because they took steps 
immediately to realign their directions. They came 
forth with some interesting statements. One was to 
indicate that the term "educationally disadvantaged" 
included handicapped children. Now to some this may 
seem a very insignificant development, but to others 
this was a major milestone in bringing impact to 
handicapped children. Subsequently there was passed 
what was then known— by the nature of the whole act 
—as the national disaster act. The only thing that was 
not a disaster was that it included a very brief para- 
graph, the Amendment to Title 1 , which brings 
special monies— federal monies— to assist state-operated 
and state-supported schools for handicapped children. 
We refer to the whole act now as Public Law 89-313, 
amended, General Title 1 , which has over the course 
of years brought money to the states for support of 
that type of education. 

Following that enactment there were other fragments 
of educational bills which brought public interest to 
bear on the training or the manpower resources for 
handicapped children. 

And, after a time, there was enacted a bill known as 
the Education of the Handicapped Act, which brought 
together under one legislative package the federal 
thrusts for handicapped children. Included in that 
particular act was the provisions for establishing a 
Bureau of Education for Handicapped Children, an 
organization that would have the responsibility to 
direct some national policy and to help influence, on 
a national scope, the impact of services to this type 
child. 

So the Bureau was organized in January, 1967, and 
from that time forth has been making an attempt to 
satisfy its national commitment. It was then divided 
into various sub-units within the Bureau, so that the 
work of providing national direction and assistance to 
handicapped children could be more effectively 
carried out. And so the Bureau existed at the outset 
with three divisions. One dealt with the specific needs 
of services— direct services to children— and became 
known as the Division of Educational Services. 

Under the scope of this particular division, the Bureau 
continues to provide direction to the states; at least 
the Bureau thinks it provides some direction. The 
service components include such things as Public Law 
91-230 which includes the Education of the Handi- 



capped Act, and a part of that, Part B, Education of 
the Handicapped Act, brings services and monies to 
the handicapped child in the local education setting 
and to the state education agency. Another part of 
that act, Part C, provides funds for education of the 
children who are early childhood level. Another part 
deals with Regional Resource Centers, a segment 
which has been a source of funds for funding this 
excellent organization, the RMRRC, whose hospital- 
ity we presently are enjoying for this conference. 
One other section of that deals with the deaf-blind 
population and intends to bring impact on that type 
of child, wherever he or she is located, bringing the 
greatest amount of services to bear there. Another 
package became known as media services and caption 
films. And then to the resources that might be avail- 
able in learning disabilities. 

One of the other divisions of the Bureau is the Division 
of Training, which provides for the development of 
manpower to meet the needs of educational services 
to such children. And then we have the Division of 
Research, which has the very exciting responsibility of 
bringing to the forefront innovative ideas in terms 
of new approaches, more effective means of interven- 
tion in the educational efforts of children. 

Thus, we have a Bureau going essentially — I was going 
to say in three directions at the same time— but essen- 
tially with three major emphases: services, the training 
of manpower and research into areas that have not 
been explored and, hopefully, some that may yield 
even greater results with national effort. 

So much for the structure of the organization. What 
about the over-arching goal of BEH? And I think we 
could very easily review this because this is a most 
significant view. The Bureau recognized that while we 
could impact on individual children, the great need 
had to be the over-arching goal which was established 
and so worded here: To provide equal educational 
opportunities to handicapped children which will 
enable each to achieve his fullest potential. Now 
obviously a goal of that dimension would be mere 
words unless it were placed into more specific action, 
and it is exciting to note that at this conference you'll 
be dealing with global issues. Then, because of the 
significant planning thac has been done here, you'll 
be coming to grips with the ways you can design objec- 
tives, and you can develop strategies to reach those 
objectives, and finally impact with activities or tactics 
in order to come to grips with how you finally reach 
the overarching goal. 



"Look, Congress, these things are being done and these 
things are possible because they are happening out 
there where the action is." 

And so the first objective here, as you know, is to 
secure the enrollment by 1978 of eighty-five percent, 
which amounts to 850,000 preschool-aged handicapped 
children in federal, state and local educational programs. 
Now, to implement that the Bureau, in addition to 
accumulating statistics on what the action is like, what 
you are doing, has made an effort to bring impact on 
early childhood education. I'll touch on that issue a 
little later. 

The second objective established for national direction: 
to assure that every handicapped child is receiving an 
appropriately designed education by 1 980, with 
eighty-five percent of them reaching that by 1978. 

The third: to assure that, by 1 977, every handicapped 
child who leaves school has had career educational 
training that is relevant to the job market, meaningful 
to his career aspirations, and realistic to his potential. 
The Bureau has locked arms with the Bureau of Adult 
Vocational Technical Education to bring some very 
intense impact into the field of career education. As 
a result, we have seen some exciting efforts expended 
where these two forces have joined together for a 
desirable end product. And such is the case now with 
the set-aside monies under Voc-Ed, where those monies 
can be made available to be used in connection with 
the state and federal and local monies to bring impact 
to handicapped children. 

Now most of these issues, as you recognize, address all 
the population of handicapped children. But I would 
want to point out these generalities to indicate that 
within all these parameters lie the potentials for the 
severely handicapped. 

Objective number four: to assure that all handicapped 
children served in the schools have trained personnel 
competent in skills required to aid each child to reach 
his full potential. 

And, finally, the fifth objective and the one that 
brings me great excitement and interest because of my 
recent assignment, but particularly because I think 
this has been for such a long time a forgotten area: to 
enable the most severely handicapped children and 
youth to become as independent as possible, thereby 
reducing their requirements for institutional care and 
providing opportunity for self-development. 



71 



Now, let's view then, in more specifics, what the BEH 
objectives are. These have been indicated on the 
global scene, and of course you recognize that with 
many of these the Bureau itself cannot have great 
bearing upon them. The Bureau essentially sits back 
there in an office in Washington and we accumulate 
statistics. These statistics are the life blood and the 
effort of you great people in providing the services. 
Though you might say we are trying to take credit for 
your work, this is not really the case at all. We're 
trying to make a visible noise nationally that says, 



These to me seem to be great objectives. When applied 
to a state level, they could be equally viable. They 
could be equally viable on a local basis and when 
approached in a meaningful manner, as you people will 
be doing in the course of this conference. 

Now, in order to give some direction to all of these 
thrusts, the Bureau developed a number of task forces. 
In doing this they developed one that targets on early 
childhood, the handicapped child at the early age. And 
this particular task force attempted to martial the 
resources of the Bureau and direct national effort for 
early childhood needs. 



The next task force that was enacted by the Bureau 
dealt with overall services, and we call it the full 
services task force. This task force has the responsi- 
bility to look at global needs of handicapped children, 
and to set some national directions. 

Then there is a special task force dealing with the 
vocational or career educational needs of handicapped 
children. This task force has done a lot of its work. 
Then there developed the most recent one— on severely 
handicapped. So essentially the Bureau has brought 
together people from the different divisions, with their 
individual expertise, and they were given the assign- 
ment of the charge to do the following things: 

First, to develop planning in these specific target 
areas— direction-setting, if you would, or at least 
sensing the pulse of where the action is and reporting 
back to the Bureau. 

Now to deal more specifically with the issues concern- 
ing us this day and for the next two days, the issues of 
the severely handicapped child. The task force for 
this particular effort was pulled together about March 
of last year and given the basic assignment I've indicated. 

The composition of the particular group represented 
each of the divisions, and particularly those individuals 
with expertise working with severely handicapped. The 
charge, then, was to develop some national planning 
for BEH and for the nation; to determine what BEH 
is or was then currently doing in this field; and then 
to determine what the national needs appear to be; the 
cost relevant to those needs; and finally, to see what 
the Bureau could do as an agency to bring some 
national visibility and finances to go with these kinds 
of efforts. And now, more specifics of this particular 
task force. 

As the task force began its action, it started on a 
survey of what is happening in the Bureau— not really 
in the Bureau— but what is really happening where 
things are going on. The task force looked into various 
activities that were then funded, and the various federal 
programs supported at the Bureau, and determined that 
there was already a considerable effort being expended. 
They looked into Public Law 89-31 3, monies to handi- 
capped children in state-operated and state-supported 
schools. They found that approximately ten to fifteen 
percent of the money was being expended on specific 
projects with severely handicapped. 

And then they looked at Part B, Education of the 
Handicapped Act, and found money being spent 
there by the local community agencies, and were 
delighted to find that. We looked into other programs 
and found that under program Part C, early childhood 
education, quite a bit was being done on severely 
handicapped. And then we found that in the Division 
of Research, interesting developments were under way, 
on the national scene. Subsequent to the survey, we 
determined that the needs of severely handicapped 
children were just being looked at and, really, despite 
the monies being spent, a token gesture was being 



given in that direction. 

And so one effort was launched, in the form of a 
special research study. A contract was accepted from 
an agency in Cambridge, Massachusetts, and this 
agency is now making a study. The study itself is 
going to do several things. Actually it has done part 
of its work already. The first aspect of the study that 
was funded by the Bureau, was to produce a 
literature inventory and an annotated bibliography of 
information relating to definitions, program activities, 
policies, procedures, implementation activities for • 
severely handicapped children. That process is 
already partly completed. They developed their 
research study, they have already published their 
literature search, and these will be made available 
nationally after having gone through all the orders 
of editing and such that need to be done. 

Another aspect of their assignment is to make a 
national survey of all programs serving handicapped 
children. Some of you may have seen these survey 
instruments. They are trying to determine in what 
manner you are providing service, if you are, to 
severely handicapped children. And so it will be 
attempting to identify localities and types of educa- 
tional delivery systems for working with this type 
child. 

In the third aspect of their program, after locating the 
spots where the service and the action are, they will 
make a rather intensive investigation into those 
specific programs. They will then develop a resource 
document which will include a great variety of pro- 
grams, various intervention methods, and the approxi- 
mate costs for implementing them. This is the kind of 
personnel needed as evidenced by the programs then 
operating. The final effort on this contract will be 
to site visit 1 00 selected programs, some in the day 
care program, some in interim care placement, some 
of them in a residential type setting under Department 
of Public Health or Public Welfare or some noneduca- 
tional state agency, and then to visit residential type 
settings. In short, they are going to attempt to see the 
wide spectrum of programs. Then they will be writing 
case studies in some depth. And this material will be 
made available for review and distribution to the 
nation. So we are looking forward to that. 

Now, the next effort that the task force became 
involved in was coming to real grips with what it is we 
are all about. One of the first things we recognized 
was the need to determine a definition. We were 
talking about severely handicapped children and 
everybody used that term. So, we said, that's simple. 
Let's define severely handicapped. Well, three months 
later we had decided that that definition was not 
simple. We had met numerous times, we could not 
come to agreement, so we finally said, look, we could 
spend our entire time coming to first one meeting 
after another, and so we took an interim step. Now, 



72 



73 



maybe this is a significant thing, because I believe that 
we could waste a great amount of creativity if we 
attempt to have everybody going the same direction 
simultaneously. Sometimes we need to have the 
fortitude to establish— on the basis of firm conviction- 
some things that enough people agree are in a positive 
direction. And then, making judgment after. After 
all, it is better to criticize something where action is 
taking place than to criticize the lack of action because 
hopefully something good will take place if something 
good starts. And so, the definition we came upon was 
one in the point of reconciliation between those be- 
havioral modification specialists and those who liked 
definitions per se. 

Let's review now the definition we developed. Now, 
admittedly some of the children you would like to 
call severely handicapped children may not fit in this 
category. But we felt it is better to try to serve some 
within the limited confines of the definition than to 
try to serve everybody and miss all of them with the 
effective programs they need. So the definition: 

A severely handicapped child is one who, because of 
the intensity of his physical, mental, or emotional 
problems or a combination of such problems, needs 
educational, social, psychological, and medical services 
beyond those which have been offered by traditional 
regular and special educational programs, in order 
to maximize his full potential for useful and meaningful 
participation in society and for self-fulfillment. 

Well, if that doesn't read like a federal regulation, we've 
all missed our callings. Within the confines of that 
definition, however, is embodied a great concept. 
Namely, what we're looking for under this definition, 
this umbrella statement, is children who have multiple 
learning problems. And as a result of the multiplicity 
of the learning problems and the impingement, one 
upon the other, there falls a need to work with this 
child from more than one educational skill. As a 
result, trying to define this to satisfy those who hate 
categorization, such children include those classified 
as seriously emotionally disturbed, schizophrenic and 
autistic, profoundly and severely mentally retarded, 
and those with two or more serious handicapping 
conditions, such as the mentally retarded deaf and the 
mentally retarded blind. 

And now we go on to talk about the behavioral 
characteristics: Such children may possess severe 
language and/or perceptual cognitive deprivations and 
evidence a number of abnormal behaviors, including 
a failure to attend to even the most pronounced social 
stimuli, self-mutilation, self-stimulation, durable and 
intense temper tantrums, the absence of even the most 
rudimentary forms of verbal control and may also have 
an extremely fragile physiological condition. 

That satisfied the need for a definition and, from that 
point, the task force went on to look at some of the 
specific goals of the Bureau in terms of what should 
we do for the severely handicapped. 

So we developed some goals. These goals were 
designed to provide national direction to this target 



population. The first objective was to design and imple- 
ment services for severely handicapped children and 
youth. And through this chart we attempted to show 
that there was a great number of children— namely 
1 ,054,000 children at least, in the category that we 
defined as severely handicapped— who are now unserved, 
Now, if you wonder where we got our data, this is 
extremely reliable. We took it from the information we 
got from the states. The states got it from LEAs. The 
LEAs made it up in the back room somewhere, and 
now it has acquired national prominence because it's 
been validated on the basis of the grass roots input. 

We then said, out of those children who are now in 
such need of services, let's take an objective and, to 
provide some input, say that we're going to provide 
screening and diagnostic services and prescriptive 
services to at least 52,700 over the course of a year. 
Now these are global statistics. We may never achieve 
them. In fact, we'll never achieve them until we find 
out what's really happening. 

Then we said, of that group who are going to be 
identified and have diagnostic services provided and 
prescriptive schemes given to their educational effort, 
let's target in on a number of that group, namely ten 
percent of them. And that would bring us to 5,300 such 
children for whom there will be designed an effective 
intervention system to provide training and/or educa- 
tion for their needs. And then we said, let's take 
another ten percent and this year bring tremendous 
impact in the delivery of new services to 5,300 such 
children. Now, you wonder how we're going to do 
this. Well, of course, it's going to happen through 
your efforts and we'll talk a little later about an RFP 
—request for proposal. The Bureau decided they are 
going to have to bring the interest up in this field 
because there may not be that much attention given 
if we didn't. So we decided we'd have to help develop 
our own objectives and then help reach them by some 
national effort. 

Objective number two was the improvement of 
services to severely handicapped children now receiving 
some services. So we said of the 230,000 severely 
mentally retarded and the 9,000 multi-handicapped 
and the 1 09,000 seriously emotionally disturbed, 
we're going to take out a segment and say of that 
total population, one-tenth of them would have a 
much improved educational intervention program. 
We felt that was pretty safe, because knowing the 
professionalism and the great drive that was in the 
minds and hearts of individuals such as you, we thought 
we could bank on you for filling that objective. We're 
just merely saying that you're going to do a lot better 
with at least one-tenth of those you are working with. 

And finally, objective number three— the successful 
employment of severely handicapped children and 
youth. Now we looked at a population, say, of 
350,000 who are now getting some services and, say 
that we are going to have at least one-tenth of them 
successfully employed. That can be a fantastic objec- 
tive, but we look to these as realistic efforts in the 
scope of the nation. If those can be the national 
objectives, then what has to be done, of course, is to 



74 



see how much of that total challenge can be taken by 
individual states. 

We then come to a special effort the Bureau launched 
in what is known as a request for proposal. This was 
entitled Programs For Severely Handicapped Children 
and Youth, and was announced nationally about the 
6th of )anuary. It said in some rather obscure terms 
that the Bureau of Education for the Handicapped is 
interested in funding programs to impact on severely 
handicapped children and youth. Approximately ten 
programs will be funded. We were unable to tell how 
much money we were talking about, we said think 
big, cost small sort of thing, but to think big. And so 
we issued that and it was mailed out on the 25th of 
January to everyone that had requested copies of 
this and to a few who hadn't requested them because 
we had accumulated a list of people we knew were 
interested. Unfortunately, we failed to tell them that 
we knew they were interested and they got copies of 
this document later and wondered what on earth it was. 
It was a sheaf of paper and halfway down we finally 
told them what was really happening. The first 
twenty-six pages told them how to get through the 
government red tape— red tape recording, should we 
say. At any event, it told them how to get through some 
of those procedures. Then finally the essence of the 
effort was explained in what they call, would you 
believe, Attachment A? In any event, the impact of 
the task force efforts was embodied and boiled down 
and condensed into that little package. It was the 
thrust we were trying to provide. We said do your 
best and most exciting things, but let us know soon 
what you'd like to do and how much you think it's 
going to cost you, and send it in. Well, some have 
done so. We gave everybody the fantastic amount 
of thirty days to respond. As of 3:30 Monday, this 
week, 41 proposals had come in from the nation. 
We're thrilled because 41 people in very diverse areas 
—fortunately we have some from the areas represented 
here— but from 41 in the whole nation it's great that 
one came right from the Salt Lake City area. I was 
delighted to see that. We have a number of univer- 
sities involved; quite a few universities were invited 
to do this. We have about nine different local educa- 
tional agencies all over the United States, one being 
here. We have State Departments of Educations 
excited about it, and now those who have applied are, I 
guess, all excited, waiting until we can find out which 
ones will get the money. They came in interesting 
size boxes, in various sizes of packages. One came in 
a box that was as high as where I stand from here to 
the floor— copies of their proposal. So there were 
differences in the kinds of things that they planned to 
do and also the enclosures that they inserted. People 
sometimes tend to send you a little bit of everything 
that they have been doing and confuse the issue. 

The next thing the Bureau attempted was to launch 
another RFP, and this deals with telecommunications 
for severely handicapped. Now, here's a very special 
effort. This one is asking agencies or organizations to 
fund viable programs for severely handicapped 
children who are homebound for a period of time, not 
necessarily chronically there, but for an interim period. 
When they leave an institution, they may have to be 



home because of a fragile health condition, they may 
be there for a week, two weeks, and we are looking 
for a viable intervention system that can proliferate 
the educational success given when the child was in 
another appropriate educational setting. To say that 
when he gets home the impact will not stop. He 
will continue to grow. That was the philosophy. 

Now, we had a little problem about the RFP because, 
unfortunately, we didn't announce that it was for non- 
profit organizations. As a result, a lot of the commer- 
cial organizations that have telecommunications as a . 
prime media effort were unable to bid, so they had 
to get in cooperative efforts with educational systems, 
and we have now on hand 17 offers to do this for a 
national effort. We'll let you know a little later what's 
developed here, but we thought you'd like to know. 

Moving onto other areas, I think it would be appro- 
priate for us to now look back to the central theme 
of the meeting today and to look at the reasons why, 
again, we are convened and the specific area now that 
was assigned to me of why or what the federal effort 
should be in setting educational policy to include the 
severely handicapped. Well, I think I have tried rather 
obliquely to address that by stating that the Bureau 
established and accepted the responsibility for setting 
some national goals, national objectives, and is trying 
to help implement them by providing some funds. So 
it tried to help by working in the areas of manpower, 
research, services and to help with finance. Then it has 
attempted to look at the development of policies and 
practices. 

How has the Bureau attempted to do this? Well, you 
may say this is a little subtle to indicate that, but in 
the writing of the RFPs there was spelled out what 
the Bureau looks at right now as some viable ways to 
plan for the needs of severely handicapped. I'll just 
mention a few. 

The first we recognized as of prime importance is the 
planning aspect. Under the broad category of planning 
are the needs to identify what the problem is— to 
define the dimensions— to define not only the numbers 
of children, but also their specific learning needs. 
Second, to find out the available resources; to categorize 
them, to list them, catalogue them as well, and then 
to try to see how nearly the needs can be met with 
available resources. Then we were looking at a third, 
for the development of a comprehensive statewide 
plan. Now this was built into the RFP so you can 
imagine as you will how we were attempting to sug- 
gest some means of procedure here. My colleagues 
presenting today and in the following days will have 
other great methods of suggesting how this might be 
done. But we were looking for a coordinated state- 
wide plan so that the services to severely handicapped 
would not be a little bauble or parcel all by itself, 
isolated, but would rather be an integral part of the 
rest of the system. Next, we were looking for an 
operational plan that was well thought through. The 
beginning of service; the entry of the service delivery 
component; and finally to include a literature and 
research review; the evidence of coordinated planning 
from all the affected agencies; the utilization of widely- 



75 



based advisory committees, showing parent input, a 
representation from handicapped individuals, those 
in the target areas. And then we were looking to a 
second major effort— that is, the delivery of services 
which would include not only the identification of 
children individually— those needing services— but the 
findings of their diagnostic needs and then making 
prescriptive services clearly known. And then, the 
implementation or the delivery of the services. This 
would include the identification of models for delivery, 
the content of service elements, the identification of 
courses of study or the development of them, and 
finally an accountability which would include a very 
careful and ongoing evaluation effort. 

Now, with all of this, you and 1 are at the vantage 
point of looking toward the future. Interestingly 
enough, the future begins today. It does not have to 
wait until tomorrow. It begins today. So as we begin 
this conference we are at the most exciting time of our 
lives. Someone has said that today is the most exciting 
day of my life because it's the first day to my future. 
Now if we look at the vantage point, we would say, 
we start right today and, in the lack of remorse for 
what we may not have done in the past, we identify 
the threads and the pieces and the elements where we 
need to pull together and tie beautiful bouquets, 
rather than knots, in the educational effort. 

What are some of these? And I'll just briefly mention 
some input that I have noted in this area. I'm remem- 
bering now an individual boy who was entered into 
the public school system in San Francisco some time 
back. The teacher was advised before this child entered 
that she was to receive a blind handicapped boy into 
her class. He also had a little travel difficulty. She 
was a very alert, eager individual, but this was even 
taxing to her. She thought, do I have the ability to 
encompass within the scope of my planning here, and 
within the educational scope of my setting in the 
school, this deviant child? But then she said, true to 
those who are imbued with the special educational 
effort, that she would do it— actually she didn't have 
any recourse, it had been assigned— but she'd made the 
best of it. So, she said to the class that afternoon, 
"Boys and girls, Bobby is coming to school tomorrow. 
He's a new boy here and I hope you'll be friendly with 
him because he will not know you until you've intro- 
duced yourself and if you can be friendly with him 
you'll like him and he'll like you. He will need to know 
where the things are in the room, where we keep our 
crayons and where we keep the various supplies. 
He'll need to know the way to the bathroom. He'll 
need to know the way to the playroom and the things 
that we do there and the outside playground. And 
just make him feel friendly and belong to the group." 
And after she had finished that she said, "Oh, and by 
the way, Bobby is blind." She said nothing further, 
but the next morning, about 1 0:00 o'clock, into the 
room came Bobby, brought by the supervisor. The 
teacher introduced Bobby to the class and he was 
presently busy with the boys and girls in various parts 
of the room. They were doing their job— each one was 
trying to do his or her job and, typical of children, 
accepting as they are at that age, he was soon taught 
where all the different things were in the room, where 



the restroom facilities were, where the playground was 
and where all the exciting activities take place at the 
school. He found himself included in the circles of 
activity. So as the school activity moved through the 
day, the teacher became almost unaware that Bobby 
was in the class. At the end of the day, she suddenly 
recognized that she had had Bobby there all day and 
had paid little attention to him really, because he had 
been so busy with the children. "Oh, where's Bobby?" 
she said to one of the children. "Bobby?" he asked. 
"Who do you mean, who's Bobby?" "Oh," she said, 
"the little blind boy." "Oh," the boy said to the 
teacher, "Teacher, Bobby is not blind anymore. He 
knows where everything is." What a great perception 
of how the handicapped child can be a part of the 
group. 

I remember a great student who went to the Utah 
School for the Blind some years back. She was visually 
impaired, but she had also a severe mobility problem. 
She had had a tubercular condition that had left her 
unable to control her actions. After she had spent 
some time in the hospital and had some therapy, she 
went back to the school and attempted to be integrated 
there, but she was a little bit out of everything. She 
not only felt like she didn't belong to the school, she 
didn't feel like she belonged to the home or any partic- 
ular environment. So she accumulated a little bit 
more of avoirdupois than others and her dimensions 
were even more difficult for her because as she gained 
weight she lost more and more mobility. Then she 
learned how to use crutches. But I remember )udy as 
she manuevered up and down the halls on her crutches. 
She would get out in the middle of the hall and then 
she'd kind of lose her balance momentarily and she'd 
sway way to the side, almost to the point where she'd 
almost go down, and anyone looking on would be sure 
that the center of gravity had long since brought into 
order its act and she would collapse onto the floor. 
But, for some reason or other, she had this sort of 
motivation to stay up and she never fell, but she just 
looked like she was going to fall and you'd say it was 
defying gravity. Well, one day )udy made a grand 
appearance. You see, she had had the experience of 
working with a special little group of young girls at 
the school and they had been taught homemaking 
skills. And they were brought into a special fashion 
show. The blind girls were going to exhibit the gowns 
they had made, that they had sewn themselves. What 
a thrilling experience. Well, Judy's time came to model 
her gown and there was a small audience and there was 
a little stage and )udy had been instructed carefull\ 
how to get to the center of the stage and how to turn 
around— can you feature that on a pair of crutches, 
modeling her gown— and then to go off, exiting very 
gracefully. |udy got to the center of the stage and 
she looked lovely. But )udy swayed a little bit— this 
was the usual hall act. We'd seen this before. She 
swayed way to the side and it did look like she was 
almost going to go down, but those of us who knew, 
recognized that the center of gravity was being defied 
again, and this was another incident. But before she 
quite got to her posture, someone in the audience 
determined that the need was very apparent and so she 
dashed bravely forward as the Samaritan of the da\ 
and grabbed hold of |ud\ and righted her up and helped 



her so she could get from the center of the stage to 
the wings. And I can still remember seeing Judy in 
the wings, weeping because the day of her challenge 
had been shattered. Somebody who had recognized 
what she thought was the thing to do had done just 
the wrong thing. How important it is that as educators 
we recognize what are the right things. And how 
important it is that we do the right things for the 
right reasons. 

And just one more. This boy jerry was not wanted at 
home. When the parents arrived with him at the school, 
the mother said, "Of course he will stay at the dormi- 
tory, will he not?" and I said, "No, not really. We 
like to have the boys and girls who live in the area 
come to and from the school every day and live at 
home with their parents." The mother sat back in a 
great deal of horror and she said, "jerry can't stay 
with me at home. I don't have a bed for him." I could 
hardly believe my ears. "You do not have a bed for 
jerry?" "No, I have no room for him." "Well," we 
said, "isn't there some arrangement you can make?" 
We went through a number of activities, seeing if there 
wasn't someplace but, literally, she had no room for 
jerry. Not because there was not a bed. There was 
no place in her heart or her countenance to tolerate 
a boy that deviant. He was not only visually handi- 
capped, he was emotionally disturbed. And you can 
imagine why. This severely handicapped boy, when it 
was recognized that he even needed a new home place- 
ment, that was done and it was effectively done. There 
was an intervention in his life, that kind of viable 
approach that you people can give. That boy righted 
himself. He was taken to a foster home day after day, 
night after night, and came to school and his progress 
continued in a great manner. What a thrill it was to 
receive through the mail, after being away from the 
school for quite some time, an announcement of that 
boy's graduation from high school. Someone who had 
supposedly been severely handicapped, visually handi- 
capped and so severely emotionally distrubed that he 
was unwanted, there was no room in the inn for that 
boy, had finally found a place in society, because 
someone cared. 

Today the someones who care are you. I challenge 
you and me to accept this moment of the day as our 
first step into the future to allow into the activities 
of our lives the needs of the severely handicapped 
child, and to progressively work for their better good. 
Thank you. 



76 



SEVERELY HANDICAPPED CHILDREN: 
AND RESPONSIBILITIES .* 



RIGHTS 



DR. EDWIN W. MARTIN 



77 



Thank you, )udy, and I'm sorry I had to stand you up, 
but we've been in the process here of trying to get all 
of our grants and contracts approved and over to the 
grants and contracts office, and also working on the 
budget and the Commissioner has put some time pres- 
sures on me; I just needed to stay here. However, 
those are productive activities and I hope you'll forgive 
me. Also, I feel good knowing that Paul Thompson is 
there with you and knowing that he can give you the 
kind of specific information about our activities that 
I know people are interested in. But I'm sorry to miss 
being in Salt Lake again, because I have some interest- 
ing memories of Salt Lake City. 

The first trip I took when I first came to work for the 
Office of Education was to Pocatello, Idaho, and actu- 
ally at that time I was working as a kind of a consultant 
for four months in a training program of the Bureau. 
Mike Marge was the director of the speech and hearing 
unit of that program and we were dividing up trips and, 
as I remember it, he went to Hawaii and I went to 
Pocatello, Idaho. Something of that magnitude. But 
anyhow, I had to go into Salt Lake City and stay over- 
night and then take a plane up to Pocatello. I was 
kidding with Ted Bell, who I know many of you know, 
about that recently. I told him the wonders of Salt 
Lake City in 1965 were that there was water running 
down the street, that at 8:00 or 9:00 o'clock on a 
Wednesday night the town was very quiet, and that 
the only movie playing was Annette Funicello in 
"Beach Blanket Bingo." All those things have given 
me a kind of bizarre recollection of Salt Lake City, and 
I was really ready to bring it up-to-date. So, I'm sorry 
I didn't get the chance. I somehow have the feeling 
that my impression is atypical. 

The area of multi-handicapped or multiply handicapped 
people has been a concern of ours for some time. 
Paul, as many of you know, heads up our program of 
assistance to state-supported and state-operated schools. 
Ever since it began in 1 966, we've really been encour- 
aging the states to deal with severely handicapped and 
multiply handicapped childen in those programs. And 
many of the first programs, education programs, within 
state hospitals for example, were begun under what we 
call that 89-31 3 money. Some states used the funds 
to provide services for the basic population in the 
hospital. Others have tried to develop special programs, 
for example, for multiply handicapped deaf children, 
such as deaf and emotionally disturbed or deaf and 
retarded; some have used them for cerebral palsied, 
mentally retarded youngsters. In a number of instances, 
the states have used funds to begin programs for those 
youngsters who, while residents of the state hospital 
system or the state school system, were not getting 
educational programs. Many of the advances that are 
still avant-garde have been made under that federal 
program which is now almost r decade old. 

At the same time the national pattern of services for 
multi-handicapped children, severely handicapped 
children, has been very much a pattern of exception 
rather than the rule. Over the years a number of parents 
have spoken to me as I have gone around the country 
and told me about the exclusion of their children from 
programs, about the— a letter sticks in my mind from a 



lady from Iowa who wrote me and said, my physically 
handicapped deaf child is turned away fromthe program 
for physically handicapped because she's deaf and 
she's turned away from the program for the deaf be- 
cause she's physically handicapped. Another lady from 
California wrote me about her autistic child and some 
of the problems she had, and on and on in every state. 

There are many such examples, so that in the last 
several years we felt that we wanted to try to focus 
more attention on this population. As Judy can tell 
you, I guess two years ago at just about this time, I 
wrote to the directors of the Regional Resource Cen- 
ters program suggesting that they try to focus more 
attention on the severely handicapped population 
within their service load. So, this background is to 
say to you that the federal government is interested in 
this area, this interest has existed for a long period of 
time, and it's reflected across our programs. Our most 
recent focus on it is simply a way of trying to speed up 
the actions that the states and locals are taking. Philo- 
sophically, it's a logical outgrowth to our deep feeling 
that each child can profit from education and that 
every child should have an appropriate education. A 
national goal of that kind might analyze where the 
failures are in our system now. 

Now, you know as I do that there are two broad 
classes of failure. One is that there are many mildly 
handicapped children or even moderately handicapped 
children who are in the school system now and who 
present a pattern to the teachers of requiring help. One 
of the places I think this has been illustrated is in the 
Rubin and Balow study reported in the Exceptional 
Child several years ago, in which they reviewed the 
population in the Minneapolis area, and they identified 
children that teachers felt required special assistance. 
These children were identified along a continuum of 
various kinds of referrals. Some were, for example, 
not promoted from kindergarten to first grade because 
they were not ready. Some were referred for speech 
therapy, some were referred for special education place- 
ment, some were referred for guidance-counseling place- 
ments, some were referred for reading instruction, some 
were left back if they still had a left-back system, and 
on and on. That population, you see, was much 
larger than what we think of as handicapped population, 
ten percent of the school age children. They discovered 
that between a third to forty percent of children over 
a period of time fell into such a category. That is, that 
the assumption that the normal population of the 
school was comprised of ninety percent of people who 
have no problems and ten percent who are handicapped 
is really a myth. That's a kind of a fallacy. Not all 
these children are handicapped, but they require and are 
identified by teachers and others as requiring a special 
modification of the school programs. So perhaps the 
largest population of handicapped children whom we 
fail is this group of children who have very special 
learning and behavioral needs and who exist in the 
schools in a relatively unserved state. 

Then there's another population which is excluded 
from the schools altogether. And our best guess about 
that population is that it is a half million children, and 
it may even be a million children. By the very nature 



en Washington. D.C., and Sail Lake 



78 



of their being excluded it's impossible to count. But 
where states have really searched out and tried to find 
such children, the kind and the number of children 
they find who are either excluded from the schools or 
who are on the waiting lists for institutions or school 
programs, who are for all practical purposes excluded, 
are of the magnitude that allows a projection of one- 
half million or more of these children. So, when I 
start thinking about the failure of the United States to 
provide equal educational opportunity for handicapped 
children, the first place I focus is on these two sets. 
Those kids who are sitting in school and whose parents 
get notes home ranging from the fact that )ohnny 
won't sit still to Johnny could do better if he tried 
harder and so forth and so on; to kids that are just 
flatly told, look, we don't know what to do with you, 
youngster, and we don't have any place for you in our 
program. We hope we will next year. 

These are problems, then, that we've got to come to 
terms with. And the Bureau will try to focus attention 
on both of those failings. Now, two other Bureau 
priorities have emerged which are kind of logical exten- 
sions of this position. One is our focus on preschool 
children, because here too we have enough evidence and 
we have enough intuitive knowledge as professionals 
to know that starting programs for these youngsters 
has accelerated their language growth, their cognitive 
growth, their psycho-motor skills and so forth. We've 
seen that demonstrated. I think we all believe it, and 
we also know that it's tremendously beneficial to the 
child and it's cost beneficial to the school systems, and 
to the state in reducing later costs for rehabilitation to 
welfare and institutionalization. For a number of 
reasons we have to provide preschool education, yet 
we haven't and the immediate reason is "we don't 
have enough dollars to do that." This reason only 
makes sense if you don't take into account what the 
long-term costs will be which are going to use up those 
same dollars later on. We are trying to focus attention 
on preschool programming and to point out the bene- 
fits to society in terms of increased potential the chil- 
dren will show, the reduction of disability. 

I talked with a fellow that some of you may know, 
Dave Weikart. He's a researcher up in the Michigan 
area and his project is one of many, but it kind of gets 
at what I'm talking about. They did a research study 
on a population of children that they predicted would 
be retarded and would require special education. They 
made that prediction on the basis of the fact they were 
of low socio-economic groups and they were part of 
families that already had brothers or sisters or parents 
who were judged to be retarded, and by the way I'm 
not giving you a fair research report because I haven't 
studied the data; I'm just trying to give you an illustra- 
tion which you don't want to take, you know, as 
scientific testimony, but merely to illustrate the kind 
of programming I'm talking about. Well, anyhow, 
those youngsters received two years of preschool pro- 
gramming and when they were in school they were 
followed up a couple of years later— I'm not sure if it 
was second grade or third grade— and at that time thir- 
teen percent of this high risk population that had had 
preschool training, were in special education programs, 
which is still a high rate and tends to confirm the fact 



that this was a high-risk population. But there was a 
control group, picked randomly from the same popu- 
lation, who didn't have the two years of preschool 
work and thirty-three percent of that group was in 
special education programs. Okay? So the point I'm 
making is that the costs of not providing that preschool 
program are twenty percent more children in special 
education, costing $1 ,500 or more a year to the 
schools. So it's clearly demonstrated in that one study 
alone that if they had given those two years of pre- 
school instruction it would have come out a lot better 
for the children and also in terms of costs. Some of . 
these youngsters may be in special education for twelve 
years. 

Now, I have another study that I'm familiar with. 
Same kind of analysis with kids who are identified at 
age three as having a learning disability. Let's assume 
they all had mild neurological problems, or a pro- 
nounced speech and language retardation, something 
that will positively identify them at age three. And the 
same type results occurred. They had the two-year 
program, down in the Houston area this one was, Dr. 
Tina Bangs reported to me. At the end of several years, 
two years preschool, two years followup training, two- 
thirds of that population was reading at age level. 
That was compared with seventy percent of the "nor- 
mal" population reading at grade level. So you really 
only lost three percent, which may not even be a sig- 
nificant difference statistically. The untreated popula- 
tion, the number reading at grade level was very small, 
I've forgotten the percentage now, but I think it was 
fifteen or eighteen percent, something like that. There 
was an enormous difference, in other words, ot the 
numbers of children who are involved in this study who 
are reading at essentially normal grade level, and again 
the preventative aspects, the reduction of frustration to 
those children and the reduction in negative self-con- 
cept, the reduction in their own feelings is what I 
think is the most important, because that's the way I 
tend to think, not as a clinician but as a person that 
manages government programs, the cost to that school 
system and society at large for those children reading 
at grade level versus not reading at grade level are just 
enormous and I think that all of you who are in this 
business understand that. So, I feel as though we need 
to begin those programs and not limit them to the 
educable retarded population, or to the learning dis- 
ability population, but for all children. You can find 
comparable kinds of progress if not amelioration entire- 
ly in severely handicapped groups. For example, many 
children who we would have educated as deaf several 
years ago are now educated as partially hearing and 
even in integrated settings because of the intensive 
training of their parents to provide language and cogni- 
tive stimulation through the early years, use of amplifi- 
cation, preschool programming, etc. 

So that's another of the Bureau's foci. Again, it's kind 
of related to this whole question of equal educational 
opportunity. 

And another priority that we've pulled out is in the 
whole area of vocational-career education possibilities. 



79 



I think most of you know, as I do, that we've had a It struck me that what we have worked for is happening 

high concentration in special education programming and I think all of us in this field should be tremendously 

in the elementary school years and then it kind of encouraged. Society is beginning to come to terms, 

phases out. The kids are left to sink or swim as they attitudinally, with the handicapped. And I think it's 

get a little older. And at the same time, there are ail a very profound shift, part of the whole social revolu- 

kinds of good voc-ed projects around the country. Many tion of the '60s and '70s that led us to be aware of the 

of them are sponsored by special ed people, some problems that blacks and other minority groups were 

sponsored by voc-ed, some involving voc-rehab in the facing in our society. Some of the sensitivity that 

kind of three-way deals which are showing remarkable we've begun to show for old people, the awareness is 

success in placing young people in jobs. And we've gradually growing in the area of handicapped as well, 

had reports of projects, where eighty or ninety percent Whenever society begins to make such attitudinal 

of the children were successfully placed. And that shifts, it's always part of a cyclical process. We have 

speaks very well for those projects. legislation, which is one aspect of the government 

speaking in this area. We have Executive initiative, 
What I 've done here in kind of an anecdotal fashion is such as our promoting the concept of equal rights of 
to trace for you some major foci of the Bureau's handicapped children. We have judicial response, such 
interest. One, on full service for all children. Two, on as the court suits in Pennsylvania and the District of 
the analysis of where that full service objective breaks Columbia and a number of other states. This is a feed- 
down, that is on the failure to provide for severely back process— a continuous loop. It's hard to know 
handicapped kids, on the failure to provide preschool which comes first. We know that the attitude, in part, 
services, and on the failure to provide effective voca- creates the climate in which legislative and executive 
tional programs. Our services programs, our training actions take place, and they in turn create additional 
programs, our research programs, our media programs public attitudes— witness the Brown court decision in 
each are trying to spend their dollars in such a way as 1964, which led to desegregation. We're into that 
to support these service objectives. They are trying to kind of social climate and I think it has extraordinary 
train teachers. I think we have ten projects, special significance for those of us in the field because we 
projects under way in the severely handicapped or need to understand that our programs are not charity 
multiply handicapped area. The research division will work. This is not something that we're doing here 
focus dollars on the analysis of the problems of because we're all such good people. It is instead an 
severely handicapped people. I expect, for example, enactment of a basic set of values and rights. We're 
we'll be putting into place some studies to trace what's dealing here with an intrinsic right of the child. My 
happening to children who are deinstitutionalized. I'm own feeling is that, as delightful as that is, it's also a 
terribly concerned that in our progress forward, in little scary because it suggests the burden is on us for 
both main-streaming and deinstitutionalization, that being responsible to these children. It's not going to be 
we won't go far enough in checking the progress of enough just to get them into school. I've made that a 
these kids to make sure they succeed. We are all, I major focus of our activities. We want kids in programs, 
think, blinded a little bit by the glitter of getting those but the logical extension of that is how good are the 
kids out of those settings and by getting kids into the programs. Do they work and are we being responsible? 
mainstream, but we're not conscientiously following up Are we reevaluating these children to make sure they 
to make sure that those programs are working. Philo- are progressing? Are we specifically identifying our 
sophically, they are beautiful and I'm in favor of them; objectives for the children? Are we communicating 
and on the other hand, I feel a deep sense of responsi- with the parents about them? Do we all know what 
bility for trying to make sure that those programs we are doing? And are we kind of keeping up-to-date? 
work, and that the children do, in tact, prosper. 

So we've been conducting a big study which Marty We're not going to be perfect. You know that and I 

Kaufmann has been managing for us, in cooperation know that. I worked as a speech clinician with seriously 

with the Texas Education Agency, which we call handicapped kids and it was frustratingly slow work. 

PRIME. It is trying to measure the impact of main- I remember a client of mine who was a very bright guy 

streaming on Texas. We're going to go on into stage and who had a tough problem, and he said to me one 

two, which we call IDEA, which will be a series of plan- time, "Progress, if any, is infinitesimally small;" and it 

ning studies measuring what happens to kids, do they became kind of the keynote of my experiences as a 

succeed, and what types of training do they really need. therapist. And it helped me understand, you know, 

So that's where we are. There is one last thing I want that you have to face where you are not doing 

to say to you, then I'd like to hear what you've got to well and not just talk about the cases that work out 

say and to answer any questions, and that is that here well for you. And I think we have that great sense of 

in Washington this week there's a series on the 1 1 :00 responsibility. It's been interesting to me that we hear 

o'clock news on CBS in which the station is reporting a lot of talk about rights and I'm one of those who has 

on what happens to blind people and how they succeed been hammering on it for a couple of years now, and at 

in our society. And on ABC there's another series the same time rights carry with them the other head 

studying the effect of programming and labeling on of the coin which is responsibility. So, I think that is 

kids. We've had the Washington Post and the Star something that we face. 
News , which are our papers here, doing series on handi- 

capped kids, columnists such as George Will, for Our responsibility is not just, by the way, to do the 

example, generally identified as a conservative, writing best we can as professional people. But I think that 

very sensitive articles about the rights of autistic and those of us in the profession have a responsibility as 

severely emotionally disturbed children. citizens as well. Citizens who understand, because of 



80 



the nature of our work, some of the ways that handi- 
capped people don't get a fair shake in our society. I'll 
bet you, and I can't see your faces, so I won't get the 
feedback except if you talk with me, but I'll bet you 
that if I were there now that some of you would nod 
to me when I say that you and I have watched children 
be placed in programs where they shouldn't be. We've 
seen children in special education facilities they 
shouldn't be in, substandard basements, old school 
buildings, churches, all kinds of places. We've seen 
youngsters in programs who should have been reevalu- 
ated and who weren't because we just didn't have the 
people to get around to it. In other words, we've 
participated as citizens in knowing the system was 
shortchanging the handicapped and we've said, "Well, 
we're doing the best we can, we're teaching and so 
forth and so on." But I wonder if we've carried a full 
citizen's responsibility, if we've used our teacher's 
organizations, if we've used our PTAs, if we've used our 
parent groups to keep these matters in the awareness of 
the school superintendent, to keep these matters in the 
awareness of the school board. Have we tended to 
think that our job ended when we went home from 
work and that we were doing the best we could in our 
classroom and that, you know, we weren't going to be 
able to rectify the larger evils in society? I think we've 
all done that, and I don't think we can afford to do it. 

One of the most profound and interesting things to me 
recently has been reading the statements of Alexander 
Solzhenitsyn. I don't know how many of you have had 
them available to you, but Washington Post has been 
carrying these statements. And the last statement 
that Solzhenitsyn wrote before being expelled from 
Russia was a statement that he wrote to his fellow 
intellectuals in the Soviet Union, and it was about 
lies. It was about two kinds of lies; the kinds of lies 
that he and others had tried to be forced into by the 
Soviet government— that is affirming things to be true 
they knew not to be true. And he went on to say 
there is enormous pressure on people to do that. You 
may have read this week another very brave writer in 
the Soviet Union who was given Gulag Archipelago to 
review and the government expected him to review it 
critically and he didn't review it totally critically. As 
a result the writer's union was about to expel him, and 
then he wrote an even more open attack on the system 
and defends himself in it. And I think what was 
happening there is that Solzhenitsyn's message to his 
people was really kind of getting through to them. 
They could not continue to say things that the state 
wanted them to say just to maintain their positions, 
and they needed also not to be quiet when certain evil 
conditions were present because that was another kind 
of lying— that was a lying by their silence— suggesting 
things were right when they knew them not to be right. 

That's a heady kind of a moral challenge that Solzhenit- 
syn gave those people, particularly in a society which 
is so repressive and in which free speech is not really 
encouraged by any means. But we have even less excuse 
to do that in our society than they have in the Soviet 
Union. And I'm saying to you that I think in this year 
of rights, this year when we talk to each other about 
the rights of handicapped children, that that means 
we've got to not only do the best we can as profession- 



als, but we've got to carry an added weight of responsi- 
bility as citizens to speak out about the lies in our 
own system. 

Judy: Thank you, Dr. Martin. I think you can tell 
why he's not only Who's Who in America , but Who's 
Who in Special Education. I think that we can take 
time for just a few questions if any of you have them, 
would you come forward to one side of the room. 
Feel free, they don't have to be weighty or, you know, 
big important ones. If there's anything you would 
like to talk to Dr. Martin about or with, please 
commence. 

(Question) Ed, in as much as you couldn't be here 
because you've been meeting with the problems on 
Capitol Hill, can you tell us what the current status 
of significant legislation for the handicapped is? 

Dr. Martin: Sure. 

(Question) Particularly the Brademas and Williams 
bills. 

Dr. Martin: Okay. Well, I'm going to start with trie 
immediate reality first, and then maybe move onto— 
what, future reality? Okay? The Education of the 
Handicapped Act also expired last year and it's in the 
kind of year's grace that federal education programs 
get. It has now been approved for extension by the 
House Education and Labor Committee as part of 
what's known as HR-69, the Elementary and Secondary 
Education Act Extension. Now, the gist of that legis- 
lation is that the current programs of education for the 
handicapped with which we are now familiar, the 
grants to the states, the teacher training, the research, 
the early childhood, the learning disabilities, services 
for the deaf and so forth, all those programs will be 
extended. The House has agreed to that. The Senate 
has already agreed to very similar packages, in fact 
passed S-896, the Randolph Bill. However, because of 
the fact that the House included the Education of the 
Handicapped Act in the Elementary and Secondary 
Education Act, the Senate will, this week probably or 
next week, repackage the Education to the Handi- 
capped Act within their version of ESEA. This is a 
very good and, I think, forward step. The Administra- 
tion is probably going to submit a modification of the 
Education of the Handicap Act to the Congress shortly 
and the timing is such that, I think it won't pass this 
year, although it may get studied. The new bill, 
as we would propose it from within HEW, would 
not be radically different than EHA. It would be 
packaged to some extent in smaller number of parts 
and there would be some interesting changes. For 
example, the learning disability youngsters would 
be included under the definition of handicapped, 
rather than in a separate definition. Our present 
program for deaf and blind children would be 
expanded to include all severely handicapped chil- 
dren. That's about the major changes in it. So, we 
think it might be a little bit more streamlined 
approach and we're interested in that change for the 
severely handicapped. I think probably those kinds 
of proposals will be considered by the Congress over 



81 



the next year or so and I wouldn't be surprised if 
they were adopted in part or entirety. 

Now, one of the major changes in House and Senate 
Education of the Handicapped Act that has been receiv- 
ing a good bit of attention here, naturally, deals 
with the Bureau itself. In both bills the Bureau will 
be extended and strengthened, and the reporting 
relationship to the Commissioner will be clarified. In 
recent years the Bureau has reported to a deputy 
commissioner and under the Bills now and under the 
Office of Education's plan, there will be a change 
in the Bureau's status. It will be directed by a deputy 
commissioner and it will report to the Commissioner 
directly. In addition, there will be some additional 
positions authorized and I think it's a very profound 
and important change. I'm glad the Commissioner 
has decided to do this and I think it's a good idea 
for the Congress to clarify its interest in that direc- 
tion as well. I think my experience has clearly been 
that a strong administrative unit is still necessary if 
you're going to have the advocacy for handicapped 
children. That's necessary. I would hope that the 
states would take a look at the relationship between 
the Bureau of Education for the Handicapped and the 
Commissioner and see whether or not such a model 
might not be useful within state agencies as well. 

Now, you mentioned HR-70 and Senate Bill 6, the 
key sponsors Brademas on the House side, and 
Williams on the Senate side. This is a Bill that all of 
you there might not be familiar with, but basically 
it proposes a very profound change in federal educa- 
tion policy—where the federal government would 
begin to support, at a very high level, approximately 
seventy-five percent of the excess costs of special 
education. So, what this would mean is— if the costs 
in Utah are $2,000 for a handicapped child on the 
average and the average non-handicapped child would 
cost $1 ,000— the federal government would pay 
three-quarters of the difference, or $750 a child. 
Now, if you take $750 a child and you multiply 
that by six million handicapped children of school 
age, not counting preschoolers, then you are talking 
about between four and five billion dollars. And I 
think the prospects of it passing in that magnitude 
are slim and none. And the reason for that is the 
total education budget for the federal government is 
about five or six billion dollars now. However, those 
Bills are very, very powerful conceptually, and they 
are, I think, very valuable philosophically because 
they do two things which are useful. First, they tie 
support to an individual child. They focus attention 
on that child. And some of the other characteristics 
of the Bill would encourage individual programming 
for a child. The federal law now in the Education 
to the Handicapped Act is not so sharply focused. 
The 313 law is partially focused in that direction— 
that is, a per child entitlement. I think the principle 
of having per child entitlements, or focus on individ- 
ual children for program purposes is a very good 
posture, if you can do it. The second advantage is 
that the bills recognize the problems in financing 
that "full services" will entail, and they suggest a 
federal role on that basis. 



Now, we have not had a federal role tied to 
helping with the costs of special education. The 
federal role has been a catalytic-demonstration role- 
beginning programs with seed money, not a "we're 
going to help pay the costs of this total program." 
And that's true across all education programs. The 
federal share of education is only seven or eight per- 
cent, the rest is state and local. So, there's a real 
question that's posed by these Bills that needs to be 
answered, and that is, should the federal government 
play a general support role in education of the 
handicapped? Is this an area, in other words, where 
the federal government should be a partner? If so, 
why? Why should it be here as opposed to some 
other education areas? Now, one may make the 
case that the federal government is quite a partner 
in the area of compensatory education, Title 1 , which 
will reach 1.8 billion this year. The federal govern- 
ment is also a partner in higher education area in a 
fairly significant way. A comparable opportunity has 
been granted to disadvantaged youngsters including 
individual grants and student loans in the higher 
education area. So it's not beyond the realm of 
possibility, that the Congress and/or the President 
might decide that there was a special need, a special 
situation that required federal remedy in the area of 
education to the handicapped. So, I think my per- 
sonal position is that the Brademas and Williams bills 
are raising an issue that needs very serious policy 
study: That is, should the federal role become a 
service connected role in relation to helping the states 
support education for handicapped children? What 
my guess is, is that the specific proposals of these 
bills and the magnitude of the funding involved will 
not actually come about in the near future— but 
there might be some other alternatives, some modifi- 
cations of these proposals which could still carry 
forward, let's say, some federal support role on a per 
child basis. 

Thank you, Dr. Martin. Are there any other questions? 
None at this point? All right. Thank you and thank 
you, Dr. Martin. 

Dr. Martin: Okay. Thanks a lot. 



KEYNOTE ADDRESS ON THURSDAY MORNING 
FRED J. KRAUSE 



82 



Thank you, Bob. In coming here to Salt Lake, I 
recalled visiting the many beautiful churches, the 
tabernacle and other sights of interest in your city. 
This brought to my attention a biblical story of a shop- 
keeper who was in serious difficult financially, and he 
went to a money lender. This money lender had told 
him it would be no problem in borrowing the money 
he needed for his business enterprises, but he had a 
time limit in which to pay it back. Understanding 
these conditions, the storekeeper borrowed the money. 
However, after the length of time had passed— probably 
then too they had various recessions and problems in 
their economy— the storekeepr could not pay back the 
amount. The old money lender said, "Well, I have 
a possible solution. The solution is that you have a 
very lovely, beautiful young daughter. I will take her 
instead of the money." The store keeper, of course, 
balked at this, but realized that he was in a very diffi- 
cult position. The money lender said, "Well, we'll 
make it a little more of a sporting proposition. I will 
take a bag and take two stones from the pebbled pave- 
ment there, a black and a white, put them into the bag 
and she may pull a stone out; and if she reaches in and 
pulls out a black stone, she will come with me and 
your money problems are over. However, if she pulls 
out a white stone, then, of course, just the opposite." 
So the daughter had no voice in this matter. And as 
the very sly, ugly money lender reached down, she saw 
him palm only two black stones, which went into the 
bag. No one else had witnessed this. 

How many times in our society today have we, too, 
been witnesses to the various types of probems and 
issues that confront the severely multiply handicapped, 
the handicapped or blind or deaf, certainly those 
which I am personally concerned with, on our Presi- 
dent's Committee on Mental Retardation. We've 
witnessed many particular acts which we believe are 
not responsible on the part of the leadership— by those 
in the legislature or by those in various administrative 
positions throughout government; or certainly, too, the 
volunteers and others who have been apathetic to the 
developments and the action on the part of the severely 
mentally retarded. Certainly, there's been public atten- 
tion focused on the deplorable conditions which 
exist in a number of the state and private institutions. 

We have feature newspaper articles such as one right 
now in the Washington Post about the blind. And 
during these temporary periods of community awaken- 
ing, concerns arise and certainly sometimes additional 
funds may be temporarily appropriated. But after 
the calm, we go back to being apathetic. We have 
witnessed, of course, in the public institutions the 
growth, that has taken place in overcrowding, in low 
levels of funding, and in other circumstances that have 
left many of these institutions providing only dehuman- 
izing systems. We find, too, that while we want to, we 
cannot always meet these problems, because, again, of 
the apathy or the lack of full commitment. Compro- 
mise and compromise has been the watchword. We 
have been somewhat politically wise to these issues. 
We've tried to develop better systems. We heard Paul 
Thompson yesterday speak of the 313 programs. 
Again, Ed Martin this morning, about some of the 
advancements that have taken place in these areas. 



But often they are just tokens. 

Out of the next fiscal year budgets, we hear promises 
of what can occur if we are to economize in one or the 
other areas. The pressure groups from various agencies 
begin to rise for their own particular slice of the pie. 
There is then, too often, the retreat from the real 
commitment, to again asking that we wait another 
year. 

We talk about our public institutions— have I mentioned 
that there are over 200,000 mentally retarded today 
residing in these public institutions, many of them 
severely multiply handicapped? We spent about one 
and one-half billion dollars last year in care and services 
in these institutions, just like the storekeeper, we 
have not been making a fair return for our investment. 
You can merely visit many of these institutions and 
find they are basically custodial. However, through 
some projects of hospital improvement, programs of 
innovation and creativity on the part of certain staff, 
we do see islands of excellence. In fact, this was the 
report of the President's Committee for 1 972, called 
"The Islands of Excellence." But as one congressman, 
Clair Burgener, who was a member of our committee, 
remarked, "Yet it is in the sea of mediocrity." 

We are expending other investments into the commu- 
nity service areas— almost a countless number of 
dollars, by local, state and federal officials. They 
have been attempting to find alternative services. Many 
of our community service groups, I think well under- 
stand the needs for these alternatives, have been look- 
ing for standards, for ways in which to measure the 
results of their programs. As Ed said in his remarks 
from Washington, while we are putting money into 
these areas, we have little quality control. Yet these 
experiences, these experiments in a sense, are all 
producing in some measure the islands of excellence. 

Oh yes, let me return to the Perils of Pauline as she 
witnessed the money lender putting the two black 
stones into the bag. She was asked then to reach into 
the bag and to pull out a stone. She knew that she 
had a stacked deck. But as she reached in, she took 
out a stone and, before anyone could see it, she quite 
accidentally, of course, dropped the stone onto the 
pebbled street. She remarked that she was very sorry 
she could not have shown them the stone, but there 
should not be any worry. They could look in and see 
that if there was only a black stone remaining, that 
she must have dropped the white stone. And I think 
in this regard we, too, have to be fast at hand. We 
have to be creative, quick thinking, innovative. As I 
sat last night and listened to some of the remarks in 
the various work groups, and as I heard the comments 
over coffee, there are many of you who are coming 
here with great innovative ideas. 

I want to congratulate those who created and have 
implemented this conference. A lot of forethought 
went into it. We are beginning to look at these issues 
that Vance Engleman pointed out, and try to highlight 
ways in which we can reorientate our thinking to 
require us to give more consideration and effort to 
redefinition of our state's and certainly on our part, 



83 



our country's responsibilities. As public officials, as 
administrators, as teachers, as parents, we all must 
understand that the severely handicapped can be 
helped. A model that the National Association of 
Retarded Citizens has used for many years now, and I 
think very effectively, is to point out that they have 
not only a right to education but this is their constitu- 
tional privilege. This positive thinking will possibly 
overcome what I explained earlier— the apathy that 
rests in many of the states today. 

Like the young lady, many of our volunteers and pro- 
fessional leaders have not only witnessed an act, but 
have taken specific action. Their quick thinking has 
caused a departure from the dehumanizing custodial 
care for new approaches, new ways, systems, alterna- 
tives to institutions, to community services, ways to 
reform some of our institutional programs, a variety 
of decentralized residential services. You'll hear more 
from Francis Lynch, who I know, from his vantage 
point as Chief of Developmental Disabilities, will point 
out some of the real advances that have been taking 
place through this more omnibus approach to serving 
the severely handicapped, those who are mentally 
retarded, cerebral palsied, epileptic, and have other 
neurological handicaps. 

We are beginning to recognize, too, the human and 
civil rights, by not only court action on the part of the 
various consumer groups in the state, but also by the 
advocates in Washington, D.C. Yes, 1 consider the 
President's Committee on Mental Retardation a national 
advocacy group. We are not bound by unnecessary 
operational guidelines, but we are directed by the 
President, by an executive order which sets forth our 
mission to provide to the President and to the nation 
the status of our services for the mentally retarded. 
The reason I came here, more than the fact of just 
having an opportunity to speak to you, was to learn 
from you about the action in this four-state region. 
What's the status of your programs? What can I report 
to Washington to those 21 citizen members of our 
committee, who in their own geographical areas are 
strong advocates in the same belief? 

We also have as our mission to provide dissemination 
of information, not only to the professionals in the 
field but to many other public groups that have had 
little contact, little awareness of what is happening, 
and in a sense to bring about a catalytic development 
between the various professional groups. We try to 
bring recognition also of the principles we are all work- 
ing toward. It would be a normalization principle 
which refers to allowing severely handicapped to obtain 
an existence as close to the normal way of life as possi- 
ble. If any of you have visited some of the public 
institutions and said, well this is not following normali- 
zation because you saw in one of the cottages a young 
boy running naked through the corridors, I think 
today maybe it is a little more normal, since he, too, is 
keeping up with the pattern of social life. We heard 
comments in some of our groups about the zero reject 
policy that Dr. Helsel spoke of yesterday. We hope 
this is being adopted, is being pursued as it is in Pennsyl- 
vania. Dr. Sherr and others remarked about the impor- 
tance of identifying, of bringing some early intervention 



and, of course, trying to provide whatever educational 
opportunities our system provides today. 

PCMR has also, then, the mission of working with the 
various federal agencies. There are untapped resources 
not only in HEW, but in the Departments of Housing, 
Transportation, in Commerce, which has provided man- 
power programs and construction funds for various 
minority group programs through Equal Opportunity. 
Certainly in the Department of Labor. One of the 
largest grants I think NARC presently has is on-the-job 
training which comes from that group. 

Now you may say, well, that's fine for the moderately 
or mildly handicapped, but what about the severely, 
multiply handicapped? Well, there are projects that 
are being funded. Very many of them that probably 
you need to know about because they can affect your 
service areas. We do have publications that give us 
some indication, some evaluation of these programs. 
If you care to write to the President's Committee on 
Mental Retardation, Washington, D.C, I will try to 
provide you with a kit of these sources of material 
that can give you some better ideas of assistance pro- 
grams for other departments. You may be surprised 
to know that the Department of Defense, through its 
various military bases, not only here in our country 
but throughout the world, has a big investment in pro- 
grams for the severely mentally and physically handi- 
capped. I had the opportunity of visiting some of the 
overseas bases and saw classes for the severely mentally 
retarded. The Defense Department realizes they are 
confronted with some of the same problems you are. 
Often need is there, sometimes the facility is not totally 
adequate, but they are very proud of their dedicated 
and well-qualified staff. Possibly some of you in 
special education have been in the special education 
services through the overseas schools and branches. 

I'm only bringing these to your attention because I 
think you have to break out of your yoke, because 
here, as I see today, are principally those in the educa- 
tional disciplines. How many of you here in the audi- 
ence are from the medical field? I see one hand, two. 
How many are from occupational therapy? Physical 
therapy? Just a few. I, of course, realize, as you do, 
that there's a big involvement here in various neurolog- 
ical problems and the need for early intervention, 
through physical therapy and occupational therapy 
services. As our committee toured the University of 
Kansas Medical and Research Branch in Lawrence, we 
were very impressed with some of the early interven- 
tion programs that Dr. Dick Chiefelbush and others 
are performing there through the occupational therapy 
and physical therapy services. 

I have talked to the president of the American Acad- 
emy of Pediatrics, particularly the chairman at the 
time of their sub-committee on mental retardation, 
Dr. Robert Kugel, a former member of our committee. 
And he remarked that one of the biggest problems the 
pediatrician is faced with today is communication with 
the teachers. I couldn't, as a special educator myself, 



84 



first grasp what he was saying or fully understand this, 
because I felt I was in teaching, in communication with 
the medical profession, but I had to admit I didn't think 
they were around very often to be of help. But I feel 
that there have been many breakthroughs on the part 
of the medical profession, the psychiatrists, the pedia- 
tricians, who want to work more closely today with the 
other important disciplines and, particularly, with you, 
as the educators. 

Now, the President's Committee has attempted to 
bring about this liaison. With your help we can do 
more. We find, too, that we have tried to establish 
some national goals. One of them has been in the 
area of prevention. And there, of course, we work 
closely with the various medical organizations and 
agencies through the National Institute of Health in 
Washington, the National Institute of Child Health and 
Human Development and many other branches. We 
find that we can, if we apply the existing knowledge we 
have in the medical and scientific field, reduce possibly 
by 50% the incidence of mental retardation. 

We find that one of our other goals which has received 
a fair amount of attention by the country— and we're 
very pleased with the amount of interest it has gener- 
ated through Washington— is for deinstitutionalization. 

We set by this goal that of the 200,000 mentally re- 
tarded in our institutions, at least one-third could be 
moved into the community. The superintendents 
themselves have been surveyed. They remark, after 
analyzing their population, that as much as 54% of 
their current institutional population could be moved 
into community service if— if— these alternative, these 
community programs are available. As we pass many 
of our programs for improvement of educational fund- 
ing, we do find a great reduction in the waiting list of 
the institutions. Of course, if we can prevent the 
institutionalization in the first place, our job is con- 
siderably easier, because once someone has resided in 
these institutions, the process is considerably more 
difficult. We also find that in this process, we have 
to try to find many untapped resources. I was going 
to relate to several case studies on those in the institu- 
tions, but because time is running late and I know 
you've had a long day yesterday and many hours 
ahead of you, I'm going to refrain from going into 
detail of case studies. 

The point is that on many of the issues and questions 
that confront the severely mentally retarded— and in 
spite of the obstacles— we are able to make some impor- 
tant breakthroughs. To remove the inter-barriers, to 
provide them some of the freedoms and opportunities 
through good team approaches, good prescription 
teaching and many other advancements, we've been 
able to make in early intervention. 

Ed Martin remarked about several studies that have 
given us some important data on what we can save 
if we bring about early intervention. We did a study, 
I should say we've done several pieces of work, in the 
area of what we can find from early intervention pro- 
grams, such as Rehabilitation of Families at Risks for 
Mental Retardation, known as the Milwaukee Project. 



This project deals with the young child, preschool age, 
and parents in overall rehabilitation of the family. Lou 
Brown of Wisconsin is intimately familiar with the 
work there. I'm sure too we can recite many other 
example. But we've felt we really had to pull this 
together ourselves, so this May we're holding a national 
conference on some of the early intervention programs 
in Chapel Hill at the University of North Carolina. 
We hope the results of that work group will be of some 
assistance to you in knowing what early intervention 
services are taking place, what the federal resources 
are, and how we are being able to make some 
important developments in that field. 

Our goal for the severely handicapped should be to 
design programs and services to help each one to devel- 
op as a person, to achieve the highest level of indepen- 
dence possible, according to his capabilities. Our 
report for 1 973, which is at the printer at this time, 
is striking hard at that theme. To achieve the highest 
level of independence possible according to the child's 
capabilities. To accomplish this we have, of course, 
asked many of the federal agencies to bring forth new 
means by which they can finance some of the services 
and programs. And in the Office of Human Develop- 
ment—many of you may not be familiar with this newly 
created agency in government— is the Office of Child 
Development, a children's bureau and several other 
services are combined there. It has the financial 
resource through Head Start, which as you know 10% 
of the funding programming there is to go to the handi- 
capped, early age. We can do a great deal more, and 
that program is being advanced by some thirty-nine 
million dollars. Other areas of Office of Child Develop- 
ment are equally being advanced about thirty-nine 
million dollars. So you have here close to an eighty- 
million dollar influx of new money, which can go 
toward many of the early service programs that you 
may want to take advantage of. 

How many of you are working with the Denver or 
Seattle offices? I hope you are more and more realiz- 
ing that through federal decentralization from Wash- 
ington, we are trying to create a means by which more 
of the services are local and are more accessible to you. 
Dr. Garfield, who I spoke to just day before yesterday 
in Denver, asked me to stress this point. As several of 
you know, he is very concerned with the Rocky Moun- 
tain area since he has resided here for many years. And 
he feels that the Denver Regional Office can be of 
great help and assistance if you reach out for its aid. 
And I believe he told me he was going to be speaking, 
if I'm correct, at the Wyoming convention of the ARC, 
and he hopes that many other invitations for not 
only him but members of his regional staff will be 
forthcoming. 

They'd like to tell you about some of the other devel- 
opments throughout the country since we've been 
trying to disseminate information to them. Since I 
had several years' experience in California, I can't help 
but remark about the delivery system in that state. 
Through regional diagnostic and counseling service 
centers today, they are able to reach the families; to 
provide not only the diagnosis, but also the counseling 
with the parent, and a service component which pro- 



85 



vides for purchasing services. It's not perfect. It has 
many flaws and problems, but it has, at least in the 
state of California, eliminated in three years the waiting 
list which was in excess of 3,500. It has further 
eliminated a number of those who were in the institu- 
tion—who were principally residing there with no ser- 
vices or program— to the alternatives that were being 
made available by this purchasing of services contract 
arrangement for community programs. At the same 
time it identified many of the gaps in services, and one 
of the major gaps for the severely handicapped was 
what then they were calling child care or day care. We 
found that this terminology left a lot to be desired, 
particularly in the minds of the legislators, less sophis- 
ticated as to what the programs and services real con- 
tent was. And in one brief moment, several of us put 
our heads together and said we see the problem here, 
as we are confronted with it in terms of this finance 
committee: they resent the term day care, they think 
of it as baby sitting. Let's go back in there and tell 
them we're talking about child development— develop- 
mental centers for these severely handicapped. To 
remove them from the institution or to prevent their 
institutionalization. I thought we were appearing in 
front of a totally different group after that recess. As 
we remarked we were not talking about baby sitting, 
we were not just talking about day care to allow 
mothers to go to the beauty parlor or shopping, but 
we were really talking about the child's needs, the 
development of services. And immediately funds be- 
came more readily available. 

Today the system of child development centers for the 
severely handicapped are in every school district in 
the state of California. And by 1 977, in a bill signed I 
think last week by Governor Reagan, it will become 
mandatory, it will be a state law, that all school districts 
are to provide, from the age of three, I believe there's 
no top cut-off, but if there is it is somewhere around 
twenty-four years of age. The fact is that this is an 
important program and we should, in time, drop the 
word "child" and consider it as developmental centers 
for the severely handicapped— in terms of these pro- 
grams as integrated with the school system, not part 
of public health, but with the education discipline with 
which it rightly belongs, with the support of the social 
work, of the PT, the OT and, of course, the physician. 

As we look at some of these issues, let's set our national 
agenda for these questions and issues. We, who have 
been looking at this only from the Washington perspec- 
tive, find that there are many internal barriers that I've 
already remarked about that we can overcome. We 
can possibly develop more services, but external barriers 
also stand in the way of progress. They will fall when 
certain goals are realized. These goals and issues are 
when every state gives priority to community based 
services, when every community meets the quality 
standards set forth in both its community and residen- 
tial services by the Accreditation Council for Facilities 
for the Mentally Retarded, which have every applica- 
tion, as Dr. Helsel can tell you, for other severely 
handicapped groups. And every community identifies 
one official or agency as being ultimately responsible 
for retarded or severely handicapped individuals in the 
care of that community, and for assuring that a broad 
spectrum of quality services are available to them. 



As long as we leave this out in the so-called never-never 
land as to who is really identified as responsible, it's 
going to be left in that kind of a maze. Let's try to 
identify, then, what official or what agency has that 
principal responsibility for target areas of lead agency 
involvement. And when every legal right victory in 
the court is made meaningful in the lives of every 
severely handicapped child and adult, I think as you 
have discussed here in some of your work groups, liti- 
gation is not the first line, it's the last thing you should 
do. But when you do, make sure you have the facts 
and you've tried every other alternative. 

This past week, the federal government, after trying 
several other ways, has finally taken its civil rights 
issue to the state of Maryland for the continuation of 
dehumanizing programs there in the Rosewood facility. 
I know from Mr. Stan Pottinger, Assistant Attorney 
General, Department of Justice, Civil Rights Division, 
he plans, with the cooperation of many professionals, 
consumer and advocate groups, to file other suits if 
no other course of action is open to them. 

Further, that every state enter into a long-range pro- 
gram to train and enlighten its administrators and 
professionals of all programs serving severely handi- 
capped persons. And when every mentally retarded 
person achieves the right to choose a place to live, with- 
out discrimination from zoning barriers and personal 
rejections, then we'll be able to overcome some of 
these external barriers. And I don't believe the word 
"constraint" as we've been using it, as I define it, is a 
way in which we're going to be constantly bound. 
These are obstacles, these are barriers, but they can be 
overcome. They are not restraints that can't be broken. 
They are only obstacles that can be broken if we 
really work toward our very creative and innovative 
ways to accomplish it. 



And that every handicapped individual can be hired or 
found with some vocational or economic potential to 
do the work and not be discriminated against because 
of his IQ or other known handicapping conditions. 

Now we don't believe that the President's Committee 
by any measure can just recite these things and they 
are going to be ultimately moved toward action and 
accomplishment. But we are trying, through preparing 
a monograph on planning community services for the 
mentally retarded and severely handicapped, to point 
out ways in which we can overcome this. Dr. Gunnas 
Dybwad and many other colleagues of his throughout 
the country are working with the President's Commit- 
tee on that project right at this time. We are trying to 
update a monograph which had been a best seller of 
ours in a way, and that was changing patterns in resi- 
dential services for the mentally retarded, which was 
first done by Dr. Kugel, Dr. Wolfensberger, and others 
on clearly describing the normalization principle. We're 
trying to reach the public through the various media, 
through TV and radio and newspaper articles and 
through our own advertisement as to what are the 
rights of the handicapped. April is being proclaimed 
in many states and throughout the nation as the month 
in which we are trying to focus on the legal rights of 
the mentally retarded and those of other handicaps. 



We are launching an effort jointly with architects to 
deal with the building code questions, the barriers, the 
zoning and other questions that have prevented their 
accessibility to programs and, of course, their ability 
to live where they choose. And travel where they 
choose, likewise. We are editing other publications and 
I won't for time go into great detail, but we often 
need your help and assistance in trying to see ways in 
which we can be more meaningful to your situations. 

We have talked a little bit here, but I would like to 
re-emphasize the importance of technology today. 
Paul yesterday talked about the telecommunications. 
In your area you are a little more enriched with that 
opportunity than other parts of the country. If you 
are familiar at all with the project out of Denver, which 
Dr. Lou Bransford is working on, it is a technology in 
which we are, through the various telecommunication 
satellite systems, able to create a means by which we 
cannot only reach into many of the rural areas of our 
four states (in fact there are eleven states engaged in 
this project, principally aimed at some of the rural 
areas where Chicanos, Indians and our various other 
rural population reside today), but to find within some 
thirty-six centers ways of two-way communication on 
health services, educational services— and I presume 
your imaginations could go on to parent education 
and other services— and communicate to the main sta- 
tion and center in Denver, right back again to this 
particular regional center for this communication hook- 
up. It is available, it is existing. In Dr. Bransford's 
way let's not recreate the wheel. Let's use our systems 
that are already available. There are many means by 
which we can reach them— literally hundreds of 
thousands of people— who have been previously isolated 
because of their distance from the main sources of 
the educational discipline here in Salt Lake and other 
cities. 

We have, of course, miles to go. It's a long road, many 
new technological and innovative areas. Let's be 
witnesses also to the progress. As Michelangelo once 
was asked, as he stood in front of a large piece of 
marble, "What do you plan?" His answer was, "I plan 
to release the angel captured in this stone." And I 
think you here today have also that opportunity as 
you are confronted with some pretty big boulders 
yourself. Begin to chip away and to carve out what is 
captured inside and that is many severely handicapped 
who are not released. Many are the bondages they 
face. They are your challenge, and you, as profes- 
sionals, have this responsibility. 



86 



KEYNOTE ADDRESS ON FRIDAY MORNING 
FRANCIS LYNCH 



87 



Thank you, madam chairlady. I was delighted with a 
remark that )udy passed as I came in. Undoubtedly to 
make me feel more relaxed and more at ease, she said, 
"It's so nice to have people from Washington come and 
recognize that they are really human beings, they really 
do understand some of the problems that are going on." 
Now, that was immediately after being rather in the 
doldrums on entering the room this morning, seeing 
the white chart over there. The white chart identifies 
one of the problems and one of the barriers that you 
all face in carrying your work— the bureaucracy. 

Now, I hope my remarks on some of the work here 
will indicate that the bureaucracy is part of the 
solution. It's not only part of identifying the 
problem or, indeed, part of the problem itself. 

Discrimination against the handicapped being physi- 
cally and socially unacceptable has always existed. 
Despite the progress in the last few years towards the 
elimination of some of the stigmas associated with 
these individuals, we still have many unresolved issues 
as we attempt to integrate other persons into society 
and, unthinkingly, expect them to accept our ways. 

As you know, we have been operating the program 
that I'm responsible for— I'm the administrator of the 
federal service that is Developmental Disabilities legis- 
lation—since October of 1970. And until June 30, 
1 973, was the predicted life of the program at that 
time. In the last year, under the umbrella Public 
Health Service Act, and until June 30th of this year, 
we will have life. We are now awaiting answers from 
the crystal ball, watching the Congress, watching the 
constituency to see what the future holds for the 
developmentally disabled in our program. 

And this waiting period I mention launches me imme- 
diately into the problems and issues which we face in 
attempting to find adequate and appropriate services 
for the developmentally disabled in our program— more 
so when we consider the thingthat we are concerned 
with is continuity of service as an issue. Our program 
authorized for three years had, in its inception, a 
forward looking thrust to cut across categorical lines, 
to let the states run their own show, and to get 
action at the local level. It is a catalytic program, 
bringing together a larger population having common 
needs, yet differing in their categorical classifications. 
The main thrust being made is to bring about interac- 
tion between and among this target population and a 
comprehensive group of authorized services for the 
target group's well being. 

As in any interaction, it must be the play between two 
or more factors that's important. Such was the case 
under the Developmental Disabilities program. On the 
one hand, we had a selected group, disabled by con- 
ditions of neurological origin, whose handicaps might 
be one or many and in varying degrees of severity. And 
on the other hand, an array of sixteen basic services 
which must be put in place both latitudinally and 
longitudinally for a person's entire lifetime. We wish 
to bring these services to the developmentally disabled 
in an economical, effective and in as appropriate a 
manner as possible. And although we did get off to 



a slow start in financing and having boards created 
and appointed and developing a new formula grant 
approach in lieu of a project grant approach, we 
believe that the services accomplished in the last 
three years are worth continuing. That, of course, 
takes additional monies and additional manpower and 
legislative support and, most importantly, consumer 
and consumer representative involvement. 

So let me tell you some of the problems uncovered, 
the issues and what we have to look forward to. At 
once we were embroiled in issues over definitions of 
terms, of stipulations over acceptance on resource 
programs. There are nine agencies in the federal gov- 
ernment—particularly in the Health, Education and 
Welfare— concerned with the developmentally disabled. 
And in the private sector there are many more. Each 
agency defines its terms, publishes regulations and 
guidelines. The target population of private agencies 
is determined by their boards of directors. And so 
here is conflict already. One agency will accept indi- 
viduals from 1 8 years of age on, another agency 
serves up to age 26, the next agency says ambulatory 
only, and the next agency has such a heavy waiting 
list it refuses to accept the more severe cases since the 
latter's problems are usually time consuming. 

The severely disabled defined as acceptable for service 
by one agency may be excluded for service by 
another agency because of its interpretation of severe 
disability. So one issue arising among the agencies and 
which may be of interest to you, is who are the severely 
multiply handicapped? We, working on developmental 
disabilities regulations and guidelines, are in agreement 
with PL 91-517 definition. Other federal agencies 
must be in line with their funding authorities. Thus, 
various federal regulations and guidelines are major 
inhibitors of joint projects when funding is derived 
from several sources. Also, private agencies must be 
in line with their funding authorities and their obli- 
gations. 

Another constraint to coordination among service 
agencies is the reluctance of agencies to relinquish 
control of their separate delivery services. Also, 
another constraint which should be mentioned is that 
about 85% of HEW's budget is in terms of uncontrol- 
lable expenditure, welfare, rehabilitation, medical 
services for the poor. Thus, we must learn to set 
priorities, to choose, to make common goals truly 
common, to find common definitions. Common or 
at least flexible regulations would lessen the red tape 
and help service providers break down the barriers 
to service integration. More work needs to be done on 
joint plans, the comingling of funds, and joint 
operations which cut across program lines. There can 
be no hope of building service networks without gaps 
or overlaps unless we establish clear definitions of 
authority, responsibility, and territory. 

Now in terms of services, let's look at some of the 
services for which provision was made under the 
Developmental Disability Act. Education, which you 



are most familiar with— we still have the situation in 
the United States where entire school systems violate 
existing laws by excluding handicapped children. 
According to Senator Harrison William's report, one 
million handicapped children are excluded entirely from 
public school systems in the United States. This 
disaster is due in part to state laws and various inter- 
pretations of the laws by local school systems. A 
Supreme Court decision in Wisconsin affirms the right 
of local school systems to exclude a student provided 
a free public education is provided by another means. 
Even where the laws are specific and clearly understood, 
local school systems, overcrowded, under-staffed, 
probably using double shifts, avert the gaps from the 
child who is going to need special attention, special 
transportation and so forth. An increasing number of 
slighted cases have been brought to court and have 
gained national attention. 

Formerly, under Mental Retardation Law 88-164, 
protests were made by the advocates. But now we 
have a group of multi-handicapped, some of whom can 
speak for their own group. But the group that was 
starting to be vocal is scattered and it is politically 
weak. 

Transportation— there's another item. Wheelchair 
cases and other severely disabled individuals may not 
be able to travel via bus, train, rail or subway. Legis- 
lation on some attempts to ameliorate this problem and 
the rights of the handicapped to have and use— particu- 
larly in Washington, D.C., the development of their 
new Metro-Transit System, that I'm referring to— to 
have use of intra- and interstate transportation facilities. 
But even when established by law, existing action has 
not taken place or has been ineffective. Special equip- 
ment, such as many of the multi-handicapped require, 
is expensive and may require extensive renovation or 
replacement of existing equipment. With transporta- 
tion companies plagued by a fuel crisis and the sub- 
ways and buses already offering standing room only, 
it may be some time before the severely handicapped 
achieve their full rights to the use of transportation 
facilities. 

In terms of architecture, it is impossible still for 
many of the multi-handicapped to have access to 
most buildings, hampered and barred as they are 
by stairways and curbs, the lack of elevators. 



structures have not had to conform to accessibility 
requirements. Yet many a severely handicapped person 
would like to get access to services in a private building. 
If the severely handicapped individual is denied 
physical access to services for his needs, it might be 
possible to remove the interference to his constitutional 
rights by court action. Although court action causes 
are becoming more frequent, I think you will agree 
with me that it is going to be a slow process for the 
severely handicapped individuals in obtaining their 
constitutional rights by depending on legal action 
only. For one thing, they cannot always speak for 
themselves. When and if they do, they do not present 
a political coalition. Cases are resolved one-by-one at 
a time. 

Moving into the area of employment, in terms of 
the federal and tne private and the sheltered, proposed 
amendments in the federal area to the Civil Rights 
Act of 1 964 would have prohibited discrimination 
against the handicapped in federal programs as well as 
in private employment. But no action was taken on 
these amendments. There is a federal employment 
program for the handicapped and the government 
sponsors an Employ The Handicapped Week. But 
according again to Senator Williams' report, only 
about two-thirds of the severely handicapped in one 
study were able, after training, to obtain employment. 
Private industry is indeed remiss in employing the 
handicapped, fearful that its insurance rates and work- 
man's compensation rates will rise. 

Not the least barrier to employment is the prejudice 
of the employer. One of the groups most discriminated 
against is the epileptic. We are learning from studies 
now being done with funding from my agency that it 
is possible to have better seizure control by measuring 
the adequacy and activity of the anti-convulsant drugs 
in the blood. This is a unique and I think a landmark 
program that benefits not only the mildly handicapped 
epileptic who can work, who can maintain himself in 
the community, but it is an also extremely useful tool 
for those who are severely handicapped by or with 
seizures who cannot respond to check and see whether 
they are being overdosed or whether seizure medication 
is being used as a constraint. The implication of wider 
use of these techniques is that more epileptic persons 
will have a greater chance of returning to community 
living and have increased opportunities for employment. 



88 



One of the prime offenders is the federal government 
system in Washington, D.C. It's impossible for a 
handicapped person who is confined to a wheelchair 
to mount the steps of the Lincoln Memorial. Still, at 
this date. Federal laws now require all new federal 
and federally financially assisted facilities designed 
for use by the public to be readily accessible. This law 
does not provide modifications for existing structures, 
however, other than those altered for federal use or with 
federal funding. 

State laws may vary on accessibility requirements. 
There is much to be done on accessibility requirements 
as a universe. Although we have noticed ramps, 
lowered water fountains, widened doors in elevators 
and so forth in public buildings, existing private 



Now in terms of the multiply handicapped in the 
community, for the multiply handicapped who return 
to the community from an institution or who have 
remained in the community— who is the one person to 
whom they are responsible and who assumes responsi- 
bility for their follow-along? Is it a staff member of 
the residential institution from which they were recently 
discharged and with whom they have infrequent or 
sporadic contact? Is it the welfare department— suppose 
they are not on welfare? Is it the boarding home 
supervisor? Should it be any of these or a special 
advocate or an agency in the community? It was 
de Toqueville who wrote, many years ago, "The evil 
which was suffered patiently as inevitable seems 
unendurable as soon as the idea of escaping from it 
crosses men's minds. All the abuses then removed 



call attention to those that remain, and they now 
appear much more galling." 

Although some of the problems were resolved, some 
of the issues were resolved, during the past four years 
we have worked in the area of developmental disabilities, 
we have become more sensitive, indeed, to those that 
remain. We know that legislation does not solve 
problems. People create them and people solve them. 
So what do we need to build on these accomplishments 
of the law in the coming years? We need a chain of 
cooperation, of both the private and the public sector 
at all governmental levels. We need, and have made, a 
start at interagency linkages across categorical lines 
with emphasis on the services rather than on the 
disability. We need more application of existing 
therapeutic measures and follow-along to lessen 
dependency, prevent regression, and make the 
severely handicapped, multiply handicapped more 
enjoyable and more employable. We need to recognize 
that although the Developmental Disabilities Act 
presents us with a new idea in the delivery of services 
—and we could spend years translating the blueprint 
into action— we feel we have demonstrated the work 
of such an approach and note that the Allied Services 
Act of 1 974 is similarly structured. 



Office of The Society for Crippled Children and 
Adults in Chicago, and call on my colleague Jane 
Shova and ask her if she would open her door and 
read to me what she has written there— something that 
has impressed me for some time. And the title is 
"Press On." And the theme is "Nothing in the world 
can take the place of perseverance. Talent will not. 
Nothing is more common than the unsuccessful 
people in this world. Genius will not. Unresolved 
genius is almost a proverb. Education will not. The 
world is full of educated derelicts. Persistence and 
determination alone is omnipotent." 

Thank you. 



We are dealing with a new philosophy— accept indi- 
viduals on the basis of their ability, not their disability. 
The more severe his handicap, the more multiple his 
disability, the more frequently does the individual 
encounter prejudice and aversion in society. Thus, 
although we have made much progress in bettering the 
lives of these most disabled individuals, I see acceptance 
as the chief issue upon which we must concentrate. 

The two principal bills in Congress concerning DD are 
Senate 301 1 , introduced by Senator )ack Javits on 
February 1 8, which amends the Public Health Service 
Act, the DD Act, and the Comprehensive Alcohol Act 
of 1970. Under this bill, the DD bill program would 
be extended for three years. Autism would be included 
and there would be an increasing emphasis on deinsti- 
tutionalization as a program objective. 

The other bill, HR1 1 511, introduced by Congressman 
Rogers earlier and on which hearings have been held, 
requests a two-year extension of the DD program. It 
is structured essentially the same as 91 -51 7, the present 
authority. 



89 



One of the things that I heard in my sensitivity ear 
yesterday at this conference was— I got the feeling, I 
guess, that there has been much said about moral 
issues and moral judgments and about constraints 
and about barriers and about problems and less about 
solutions. Now, I as you have been around long 
enough to know that one of the more odious things 
that Washington-types do when they come out into 
the hinterlands and speak is feel impelled to leave 
you with an uplifting message. Recognizing that, 
I thought that perhaps as I was perceiving it, one 
theme was perhaps missing that I want to leave with 
you as a person, rather than as a Washington bureau- 
crat. Unfortunately, I don't have my speech file with 
me. So I had to make a long distance call to the 



THEMATIC STATEMENT FOR SYSTEMATIC DELIVERY SYSTEM 
BY DR. RICHARD SHERR 



90 



Before I talk about providing a systematic delivery 
system, I would like to give you something of a con- 
text that you can relate our delivery system to— what 
has happened in Pennsylvania and what some of the 
preceding events were. Before I do that I'd like to ask 
a question of you, and that is how many of you know 
what we mean by "right to education"? 

I think we've got some work to do and I hope by the 
time you leave at the end of the three days we will all 
know that. The reason I ask that question is that it's 
the kind of statement that we all think it means some- 
thing to us, does mean something to us. But to par- 
ents, a right to education means many different things 
and to professionals, I'm finding as I talk with you 
here and as I talk around our state and around the 
country, it has a different connotation also. To par- 
ents a right to education may mean finding the right 
educational program after many years of not having 
any program available to them. Some parents see the 
right to education as a means to the kind of programs 
they want whether it is appropriate or not. Admini- 
strators may think of the right to education as simply 
putting the child into the school process without any 
consideration as to what is most appropriate and bene- 
ficial for the child. You, as concerned professionals, 
should think of the right to education concept as not 
only a program for a child, but the most appropriate, 
beneficial, meaningful program for that child. And I 
hope we can spend some time today and tomorrow and 
the next day developing what is that kind of program. 

The above statement regarding the right to education 
without regard to degree or severity of conditions is 
probably a myth in the United States, despite the 
rapid increase in state departments and the rapid in- 
crease in litigations. It's a myth because we have not 
really defined what we mean by a right to education. 
Looking at the right to education in Pennsylvania, 
which has been widely acclaimed as a model and in 
some cases litigation follows very carefully right after 
the Pennsylvania model, we think it has many good 
aspects. Unfortunately, it only addresses itself to the 
mentally retarded. And as you heard this morning, 
there are other multi-handicapped individuals besides 
the mentally retarded. Despite the flaws, the fact that 
it addresses itself only to the mentally retarded, there 
are many good things in the Pennsylvania consent 
agreement. And I would like to review for you how 
one regional service unit became involved in a compre- 
hensive delivery system for severely handicapped. It 
would be beneficial to sketch out some aspects of the 
legal and legislative features relative to the Common- 
wealth of Pennsylvania and the specific features of the 
agreement. 

There were two major impacts of the Pennsylvania 
agreement. The first was that all children were to re- 
ceive a free program of public education without 
regard to severity of retardation. Notice, I am saying 
retardation. All children, without regard to severity. 
The second aspect is that all children and parents are 
given the right to question the placement or nonplace- 
ment in a program through a due process procedure, 
which includes a formalized hearing with the hearing 
officer delivering recommendations. There's a lot of 



impact to that because the hearing process really 
serves the family. These two procedures are very signif- 
icant. However, to implement them, other significant 
aspects of the program were developed. Most signif- 
icant of these was the fact that the federal court 
assigned masters who were professionals, in one case 
an attorney, to develop a process for the state whereby 
all the features of the right to education program must 
be delivered. This process was very complete and wide- 
reaching and was developed and implemented as part 
of the State Board of Education regulations. 

What I'm saying was each school district couldn't go 
about, in their own way, delivering education to all 
children. They had to follow the process which was 
designed by professionals and an attorney and then 
accepted by the federal court. The Commonwealth 
of Pennsylvania was mandated, and the school districts 
also, to follow that process. So there was some uni- 
formity of the programs. 

Another significant feature of the consent agreement 
in addition to the process was the amount of effort 
expended by the state, in demonstrating to districts 
and regional service units how this could be done in 
terms of statewide in-service programs, publications, 
manuals. A great number of meetings, very much like 
this in terms of helping school districts.implement 
these procedures. 

In terms of describing to you how the systematic 
delivery system was developed in one area, I would 
have to give you something of an overview of our area. 
We're a two-county unit with twenty-two independent 
school districts that we function within, as a regional 
service unit providing most of the services— all of the 
services that they desire— and most of the services in 
special education. The districts have a great deal of 
autonomy and we act and work with them very care- 
fully in developing procedures. We do not mandate to 
them nor we do not act with them in an autocratic 
way, but in a cooperative way and that's rather signif- 
icant. 

We serve about 1 00,000 school-age children in those 
two counties, and I mention that to you because it 
relates somewhat to the areas that you folks are trying 
to serve, either in multiple district arrangements or 
county arrangements, or in some cases state arrange- 
ments. 

With that kind of context, I'd like to talk a little bit 
about the systematic delivery system. Before we do 
that, I hope that we are all talking about the same 
kind of child. As I talked to several people at the con- 
ference I heard them talking about a child that was 
somewhat different from the kind of child we're serv- 
ing as our multiply handicapped child. I'm talking 
about children that do not have mobility, that come 
to us in a little van, strapped into a wheelchair, the 
wheelchair strapped into the van. And when they get 
into class they may have to lie on mats. I'm talking 
about children who do not have bowel and bladder 
control and cannot feed themselves and are not able 
in some cases to turn over on the mat. Now surely 
that's the most impaired of the children, but we have a 



91 



number of children of that type. That's what I'm talk- 
ing about when I talk about the severely multi-handi- 
capped child. That's the kind of person I'm going to 
be addressing. 

The beginning phase of our development of our pro- 
gram was a very careful philosophical review within 
our intermediate unit as to what we wanted to do and 
how we wanted to go about it. We knew we had a 
federal court order that was upon us. We knew that 
state regulations had certain other mandates. We did 
not go off willy-nilly developing classes without some 
philosophical rationale, some philosophical basis to 
lead us as we developed a program. I think that's im- 
portant. Otherwise, you might end up with a hodge- 
podge of services. So the beginning phases, which you 
can well do in this conference here, is to determine 
where you want to go and how you want to go. 

The next step was a very careful review of the legal 
mandate and a very careful review of the newly organ- 
ized state regulations, so that we were not in any way 
liable— liable in the eyes of families as we developed 
the services, but to make sure that we were in the 
context of the law and also the state regulations. We 
also searched that very carefully, so we would see what 
financial responsibilities the state would bear and what 
financial responsibilities we would bear. And that's an 
important consideration also. 

It might well be that as you develop programs volun- 
tarily, that you do not do that under a court order or 
by state regulations, you won't have that same prob- 
lem. But as I look at the climate across the country, 
I suspect that many of the programs are going to be 
developed under court orders or under state regulations. 

The third step that we took in developing a system was 
to work very carefully with our constituent school 
districts. We met with the twenty-two independent 
superintendents. We first hit them over the head with 
a lead pipe— the court order— to get their attention; 
then we threatened them that we would not defend 
them if they got into a court suit. We had their atten- 
tion, we started developing cooperative arrangements 
in how this shall be done on the intermediate unit- 
wide basis. Most of our districts-all of our districts 
operate their own educable retarded classes. Inter- 
mediate units develop the trainable programs and we 
also develop the total program for the severely, multi- 
handicapped. 

It was important that we work with those twenty-two 
school districts because even though we are funded by 
the state, they ultimately pay that bill because the 
state charges that back to them on per-pupil basis. 
Also we needed facilities in some cases and we needed 
the support of their administrative group. 

After we had worked with the school districts, our 
next step was the search for children. That sounds 
rather strange because every state has some kind of 
law that you must maintain an annual census of chil- 
dren and so on. But you would be surprised when you 
look into it how loose that annual census was. It was 
also imperative that we search for children because the 



court order said each intermediate unit school district 
in the state department shall seek and locate every 
child retarded or thought to be retarded and we 
wanted to comply with that to the letter of the law, 
so we searched very carefully. We did that in a variety 
of ways, covering a two-county area, two major cities, 
and twenty-two school districts. We covered a wide 
area, as you do also. And we couldn't, obviously, 
send staff out into the fields so we used the media 
newspaper advertising, we worked with the two tele- 
vision stations that serve most of our area in terms of 
TV spots, we approached all the civic clubs, had them 
make announcements at civic clubs, we engineered 
through our school districts that every school-age child 
took home a flyer, and the intent of that entire mes- 
sage was, do you know of a handicapped child, a re- 
tarded child, if so call this number. We had a full-time 
secretary who did nothing but handle the phone and 
keep the list of children. 

It is interesting that most of the children who we 
learned about we already knew of or had in a program. 
We turned up about a dozen children that were in 
someone's attic or hidden away in some other part of 
the house, that we did not know before. I might say 
we were rather pleased that there weren't more chil- 
dren that we weren't already aware of, or serving. 

After the location and identification phase it was im- 
portant for us to know what skills these children had, 
what were their major deficits, what did they need. 
And we referred to that as the evaluation phase. To 
simply take a name and a suspected disability and 
place in a class was not reasonable, so we had to gear 
our total staff of psychologists that summer to evalua- 
tion of the children. Our psychologists still shudder at 
that experience, but it was necessary if we were going 
to develop an adequate program for the children. We 
also inserviced all the local district employed psychol- 
ogists. We had a team of twenty psychologists that 
worked evaluating all the children whose names 
appeared whom we did not already know. 

In the evaluation process, we had to have, we felt it 
essential we have some uniformity among the psychol- 
ogists, so we used the state form which was a fourteen- 
page evaluation form. Now it's not significant that it's 
a fourteen-page form, as a matter of fact, it could be 
boiled down to fewer pages, but it is significant that 
we got the same information about each individual. 
That way we could start grouping for classes and so on. 

After evaluation, the next step was placement. We 
looked at the array of classes that we had, trying to 
group the children to the best programming. The 
next major consideration was staffing. A lot of the 
children that we uncovered were children that were 
already involved in some type of program that was 
sponsored by an ARC Chapter or UCP Chapter or by 
the Department of Mental Health and Mental Retar- 
dation. We had to assume those children. In several 
cases of our staffing, we took the teachers already- 
involved, even though they were not certified in the 
education system, as temporary employees until we 
saw what kind of skills they had and whether they 
could be the kind of professional we wanted. And 



interestingly enough we turned over about fifty per- 
cent of that personnel by the middle of the year. 
Some of the people did not want to do what we wanted 
to do or they couldn't meet the certification. 

Then after we selected staff we found that there were 
still great gaps in the kind of delivery in the classroom 
we needed, so we became involved in a very intensive 
in-service program. The teachers were a dedicated, com- 
mitted group of professionals and they didn't mind 
giving us time in afternoons and early evening to 
work on the necessary skills that we felt they had to 
have. 

The final phase of the program we delivered was the 
evaluation after that first year. We looked at what we 
did right and what we did wrong and tried to revise 
what we did the next year. 

So much for the systematic delivery system. The 
final point I would make to you as you deliberate over 
the next three days is the kind of feelings and thoughts 
that you have in your head about serving the multiply 
handicapped children. We had some people that were 
very honest with us on our staff. They said to us, "I 
don't feel I can become intimately, deeply involved 
with the type of children we are dealing with. I 'd like 
to be reassigned." We tried to honor that request. I 
think you have to search in your own mind— is this the 
kind of child you want to become involved with. Then 
acquire the skills to do the job. 

That's a very cursory overview. If you are with us in 
the several remaining workshop sessions I'd like to 
dig as deep as we can into the several points that I 
mentioned to help you in the context of your own 
school administrative system to develop the same kind 
of program for your children. Thank you. 



92 



THEMATIC STATEMENT FOR IDENTIFICATION OF CONSTRAINTS 
ON GETTING CHILDREN SERVED 
BY DR. ALBERT BERKOWITZ 



93 



Last October when Vance called me on the phone and 
invited me to Utah, it seemed like it was terribly far 
off and I was about not to think about my charge then 
for the next three or four months. I hung up the 
phone and, of course, my compulsivity said, okay, get 
ready now. So in sort of a stage whisper I said, iden- 
tify constraints to the delivery of services, hmmm. 
And my secretary popped up from the behind and she 
said, "That's not a problem, we've got all that in a neat 
little package." I turned around quickly in the chair 
and I thought, I've got it made. "Where is it, leanie, 
bring it, show me." And she said, "It's right in front 
of you," and she handed me my appointment book. 

At the time I really appreciated the humor but I didn't 
really appreciate the insightfulness of that secretary. 
She's absolutely a wonderful girl and she is indeed the 
part author of this paper. I have already told you in 
my pre-conference message that with a very minimum 
of effort I was able to identify a dozen or so constraints. 
And about two weeks ago I decided that (eanie's idea 
of looking in my appointment book and other appoint- 
ment books was probably a much better way to de- 
scribe some of those constraints. Especially the way 
bureaucrats spend their time. And so I sent a quick 
memo to the five chiefs in my office and asked them 
to send me their appointment books. And this is two 
weeks ago Monday morning and this— some of it— is 
copied out of their books, others were little discus- 
sions that I had with these five chiefs. I think you'll 
probably be able to recognize the constraints. 

The first one that I looked at was the chief of develop- 
mental day care centers. Her morning activity was 
centered around a transportation problem. We in the 
Department of Mental Health run or operate develop- 
mental day care centers for school-age children that 
are excluded from public school programs because 
they are severely multiply handicapped. Many of 
these children are low intellectually functioning chil- 
dren and the day care center centers around being a 
core program more than an educational program. Hope- 
fully, we are moving towards changing that a little bit. 

This year we were fortunate in convincing the local 
school boards to pay for the transportation of our 
client to and from the developmental day care cen- 
ters. And it seems as though we overlooked one impor- 
tant thing: school runs from September to |une with 
three or four weeks of vacation in between. The 
developmental day care centers, as alternatives to 
institutionalization, run twelve months a year. A size- 
able number of our clients cannot come to the program 
for many, many weeks of the year, simply because the 
local school system has not contracted with the local 
bus company to provide that kind of service. That's 
not resolved, by the way, so there's no happy ending 
to that one. 

The chief of residential care had a telephone meeting 
with a legislator. I guess maybe this is the predecessor 
to the Martin Bell Telephone Conference. It seems as 
though this legislator has a constituent with a 
twenty-two-year-old daughter who has been living in 
one of our state schools for the mentally retarded her 
entire life. The staff at that school is determined that 



she would be better off living in a small community 
residence. That's a program for about eight to ten 
individuals. We program or contract with private 
agencies to run a program. )ust an interesting note 
about that program because I think this is indicative 
of some of the things we might be talking about here; 
we don't contract with anyone who cannot also pro- 
vide some kind of activity for every resident that we 
place or that we deinstitutionalize. In the contract it 
says that in addition to a place to sleep and eat, they 
have to provide some way of getting these clients to 
and from different programs. They range from com- 
petitive employment to sheltered workshops to the 
developmental day care centers I mentioned before. 
The parents of this young lady, and note she is a 
twenty-two-year-old lady, have decided that what she 
needs most of all is to remain for the rest of her life 
in this state institution, because it's safe and it's quiet, 
it's lovely and it's far, far away from the city, and a 
few other such things. After thirty minutes of conver- 
sation, the chief of residential care explained about 
this national movement we have and about all the 
wonderful things that professionals have shown in the 
deinstitutionalization process. )ust quite coinciden- 
tally, the legislator has a copy of our internal news- 
paper and there's an article in there by the superinten- 
dent of that very school. And he read it to me and in 
it quotes the superintendent as saying, "Communi- 
ties are not adequately able to absorb the influx of 
such residents into the community." A constraint: 
the intra-agency disagreements that are going on. 

The chief of evaluation had a better problem, I guess. 
This relates to the personnel regulations within bureau- 
cracy. I'm not sure how I'm going to label this con- 
straint. It seems as though the current examination for 
the entry level, direct-care workers jobs that we have 
are asking certain questions that very, very effectively 
eliminate certain minority people. In brief, certain 
people can never pass that test. Or to say it another 
way, the people that pass the test all look very much 
the same. I'm told the job specifications are written 
by my office. But we didn't write the examination, I 
tell them. But he said, "Yes, but you wrote the exam- 
ples of duties." And so I sent for a copy of the exami- 
nation and not only are the examples of duties and the 
examinations irrelevant, they bear no resemblance to 
each other. The questions that they ask are questions 
that I am sure I would flunk, and I don't know who 
wrote the test. But, here we are faced with a whole 
wide variety of citizen advocates that are saying, you 
know, never mind taking care of your clients, take 
care of society. We in society should also have a 
chance at helping you. 

Off to another subject. Chapter 766, that's a favorite 
subject of mine. It's a new law. It's the Massachusetts 
law that unites us with a nationwide movement on 
behalf of special needy children. I was interested in 
my recent trip through a junior high school and it was 
a young man walking down the hall and I couldn't 
quite figure out what he was doing except I think he 
was doing what I did when I was in the seventh grade 
and that was procrastinating and trying not to get 
back to the room. And I said, "Could you direct me 
to the class for the mentally retarded?" And he said, 



94 



"Oh, do you mean the speshes?" You know, we don't 
have any mentally retarded kids anymore, we now 
have "speshes," and that was going to be an improve- 
ment over labeling children, I guess. I go off onto 
these tangents and then lose my place. 

The Chief of Planning and Chief of Budget Management 
are meeting with the Department of Education rep- 
resentatives. They have the responsibility by this 
Chapter 766 of providing education for all special 
need children. The law says that the Department of 
Education will "establish and maintain an institution 
school department in every one of the state schools 
for the mentally retarded." The problem today is 
what does it mean to establish and maintain an educa- 
tional program? Is that the teachers and the teacher 
aides? Does it mean the speech correctionist, the phys- 
ical therapist, the psychologist, the recreation special- 
ists and many more? I don't know. The Department 
of Mental Health says that if we take all those people 
that have something to do with the education needs of 
the youngster then we will be leaving the superinten- 
dent of the schools with being a high-class Ramada Inn 
innkeeper. 

The conversation in that particular case— the conver- 
sation went off on a tangent. That's my cue to get 
out. The tangent was, though, interestingly alluded to 
this morning a little bit by Mr. Thompson when he 
talked about the federal funding and the reimburse- 
ment policies. It seems as though if we move psycholo- 
gists and speech therapists and physical therapists and 
recreation specialists and so forth out of the mental 
health rubric and into the education rubric, we might 
be cutting ourselves off of Title 1 9 or SSI or SSA or 
4A or 89313 and all of those other numbers. And so a 
subcommittee has to be formed quickly to check on 
making sure that we don't lose out on federal funds. 
A constraint, with due respect to all of the "feds" that 
are here— a constraint to the delivery of our services. 

It's sufficient to say that all of those things that I have 
just mentioned happened; they all went on before 
9:20 in a working day. And when I got all the chiefs 
together and told them what I had said and shared 
what I was planning to do, they said be sure and add 
it's not so bad, because in another twelve hours after 
that time we'll all be home. We'll be resting comfort- 
ably, waiting for another day. 

In a class action suit (Mills vs. Board of Education in 
Washington, D.C.) before a Federal District Court in 
September, 1971, the plaintiffs claimed their denial to 
an education was because of alleged mental, behavioral, 
physical or emotional handicaps or deficiencies. The 
school-age children had been denied placement in a 
publicly supported education program for substantial 
periods of time. It was pointed out that the handicapped 
children are "a voiceless and invisible minority who 
constitute perhaps the most vulnerable group in society. 
Those who need the most are denied the most. The 
direct care of front line people working with the 
severely multiply handicapped are often the least 
trained." 

Bank-Mickolson, the man from Denmark, recently 
gave me his formula on how he would determine the 



kind of a person we need to work with the severely 
multiply handicapped person. He was talking specif- 
ically about profoundly mentally retarded. He said, 
"Determine the mean 10 of the group of children; add 
to this the IQ of the staff member and the closer you 
get to 200 the better off you are." That means that 
if your clients have an IQ of 1 00, any one of us could 
fit the bill, but if the mean IQ of the group is 50, then 
we better start thinking a little more seriously about 
who we put in front of those people. 

Back to the courts. A recent publication of HEW listed 
sixteen court cases under the title of "Right to Educa ; 
tion." Numerous others were reported under other 
titles like "Right to Treatment," "Right to Protection," 
"Right to Peer Classification." During 1973, legisla- 
tive advances in behalf of handicapped citizens were 
dramatic. I was going to list several of the notable ones. 
I should not leave this platform without listing at 
least one, Utah's Senate Bill 21 8, which I understand— 
which I don't understand. But I read the law. I thought 
I understood what the intention was and I was delighted 
since it mandates the local school boards will pick up 
the tab for the mentally retarded children who are now 
living in state institutions. And by the way, that 
worked wonders in my state, because local schools and 
local cities and towns realized that they could save 
money by bringing kids back into the community. 
And so it helped us in our deinstitutionalization pro- 
cesses. But the reason I said that I don't understand 
is that I read the other day in the New York Times that 
it's a wonderful law, Senate Bill 21 8, but that the 
legislature appropriated only half the money that's 
needed for that law. I don't know where the other 
half is going. 

Sounds good. Legislative advances we can expect to 
really be of help to us, except one important thing 
that's bugging me. And that is that the courts and the 
legislators seem to be the primary impetus for change 
and it's not us. It's not the professionals. 

The Wall Street Journal, December 1 8, 1 973, featured 
an article. I received about eight or ten copies of that 
one article from friends all over the country that 
seemed to know this one bias of mine. And the head- 
line was: Federal Court Order Brings Big Changes in 
Lives. And it goes on to talk about a southern hospi- 
tal institution, where the federal court mandated 
changes and restored some dignity to the patients, to 
the clients. I think B. F. Skinner would probably have 
a reaction to one of the staff member's explanation in 
that southern hospital about his program. He said it 
was essentially a behavior modification program with a 
token economy. And the reporter said, what's that? 
And he said, well we send her out on errands to do 
things for us, and if she does them right we give her 
tokens, and if she saves up enough tokens, she goes 
out and buys things. 

The German poet, Goethe, once said, "If you treat an 
individual as he is, he will stay as he is. If you treat 
him as if he were what he ought to be, he will become 
what he ought to be, and more, what he could be." 

The constraints that I've identified, and I hope that I 



will elaborate this afternoon on a dozen or so con- 
straints, are basically related to traditions, with due 
respect to the Fiddlers on the Roof. They become 
fixed and very hard to break: to diagnosis, the art of 
which is somewhat unclear; our focus of attention 
which brings us great comfort in being able to assign 
labels to what's wrong; to satisfying money-givers and 
to compartmentalizing or fragmentizing services in 
some way; to inter- and intradisciplinary disagreements; 
to training models, etc. It occurred to me, after listing 
all these constraints, though, that practically 100 
percent of them are not symptomatic of a disability. 
That is, they are not inherent in the child's severe, 
multiple handicap at all. They lie outside of the 
child. In some way they are imposed on that child. 
I'm optimistic, though, because I really believe that the 
disposition of those constraints is really within the 
control of professionals. Of you and I. 

My chiefs are good people. They are able to deliver 
lots of good services, but their appointment books get 
in the way. Of course, appointment books are not 
inherently constraining. But the social handicaps that 
they present are. And I wonder, would severely, multi- 
ply handicapped children accuse us of being their 
appointment books? Thanks for listening. 



95 



THEMATIC STATEMENT ON OPTIONS FOR UNSERVED CHILDREN 
BY DR. ELSIE HELSEL 



96 



Thank you, Bob. I'm not going to get trapped like the 
rest of these guys with all these notes coming up and 
not getting through my speech. I see you've probably 
got on your stage the greatest collection of gabby 
people in the United States. We all write things down 
we have— Vance told us— no more than ten minutes, but 
we all run overtime. So, if you'll just get out your 
little folders, there's something in there called "Issues 
and Options for Severely and Multiply Handicapped 
Children." I'll try to get as far along through that as 
I can and what I don't get to when I get that little 
sign saying, you know, your time is up, then you can 
just read the rest of it all for yourself. 

The other thing that I'm going to do is very quickly, 
whoever is going to show my six slides, get my children 
up here for you to see, because I hear us all worrying 
about are you really talking about the kids I'm talking 
about. ]ust leave Petunia up there for a little bit, and I 
want to get into my talk as I have written it. 

I have chosen to talk about issues and options because 
I found I just couldn't separate them. And I'd like to 
—just for a minute— have you focus on what the issues, 
what some of the issues that I haven't heard mentioned 
this morning, are concerned with services for severely 
multiply handicapped, and ask yourself the question, 
do we really have options? Are we really ready? All 
the people in this room, to stand up in public in front 
of God and everybody and commit educational tax 
monies to a group of children who have little or no 
employment potential and who will have no way to 
pay society back for the investment in their educa- 
tion? Sorry about that, Paul, but even though I can 
see maybe one in a million getting into the employ- 
ment field, a group of kids I'm talking about have no 
employment potential, and I don't want to fool any- 
body about it. 

This little girl you see in front of you was a little girl 
found in one of the institutions. That child has abso- 
lutely no brain tissue at all, nothing. You can trans- 
illuminate her skull and nothing is there. She could — 
she was on tube feeding when we found her, she has 
no mouth closure, just an absolutely impossible child 
to manage. She's driving her family up a wall because 
she was screaming day and night. May we have the 
next slide on Petunia. 

Here she is after we found out how to develop some 
procedures for Petunia. Teach her to suck and swal- 
low, to be able to rest at night. Petunia has no 
employment potential, but I think Petunia has a right 
to education in terms of developing whatever skills 
she is able to have. That's one of the issues that I 
think we must face. Is the United States of America, 
the Congress, and the general public really committed 
to the judaic-Christian ethic of the dignity and worth 
of every human being, including little Petunia? Or are 
we really still hung up on that work ethic? And are we 
willing, and do we have the guts to stand up to 
those people who are going to say to us when the bills 
begin to come in on the total cost of providing an 
education for this population, are we really willing to 
stand up to them and say yes, we are going to do it? 
No, we are not going to subscribe to euthanasia by 



attrition, which is what you are going to propose to 
us: namely, just let them lie out there, keep them dry 
and warm and zonked out in bed for the rest of their 
lives. Because it's going to take real guts when the 
bill comes in to the taxpaying public and they find 
out what we're up to. These are difficult questions, 
but I think we'd better have some answers to them 
before we embark. 

However, if you like challenges and you thrive on 
being on the cutting edge of the action, join with those 
of us with gray heads who came to this cause in the 
forties and fifties and thought we were developing 
services for this very group of children and we've been 
standing in the wings waiting all this time. We have 
lived through a lot of philosophies. One that was there 
when we came on the scene was if you've got a kid 
like this just forget it and hide it away somewhere. 
Don't bother us with it. Then we got a little more 
hopeful as we began to educate the public and get our- 
selves stirred together and we got into a philosophy of 
okay, let's screen these kids and segregate them. We'll 
do something for them, but keep them away from the 
rest of us. Now we hope we've gotten to a philosophy 
that says, okay, let's identify and help them, regardless 
of the cost and regardless of what they are going to 
contribute. 

These are the children that I hope we are now concerned 
with and that we are trying to direct our attention to 
adequate programs for. 

And now I'd like the other two kiddies that I brought 
with me so that I'm sure I'm talking about the chil- 
dren that you are talking about. Here's a little boy 
that we found in Central Colony. You'll say, my, isn't 
that nice— in an institution and he's got clothes on, 
shoes and everything. That's beautiful. That's really 
doing great for that kid. Excepting that he could have 
spent the rest of his life lying there, looking at the 
world and God only knows what it looks like from 
that position. Let me show you what can be done 
with a child like this with some of the techniques— 
and may we have the next picture of Joel ? We found 
through one of our many team projects that a thera- 
pist told us if you just punch that little boy in the 
sternum you can inhibit some of those reflexes that 
are pulling his head back like that. And if you can 
keep pressure on him, and that is what the therapist 
is doing there in the next slide of Joel, notice that 
restraining strap around him, you can get Joel up into 
an upright position. He can get some functional use 
of his hands, he can relate to people. Joel now no 
longer lives in Central Colony in Wisconsin, but is out 
—that picture was made incidentally in Central Colony, 
but he no longer lives there. He is out in a group home. 
He is in a trainable program in the school system 
there. So, this is the kind of kid that I say is severely 
and multiply involved and that I hope we are directing 
attention to. 

May I have the last little girl, and who told about some 
kids that you bring them in— oh, it was Dick— bring 
them into school, you can't get them into supportive 
equipment and right now all you can do is either lay 
them on a mat or litter. This is this kind of child who 



97 



has absolutely no muscle control at all. She could 
have spent her life looking at her navel. 

Next slide, please. Here she is when we finally bring to 
bear on this little girl all the knowledge and skills that 
we have in order to position her, in order to support 
her physically so that she is in a learning position. This 
little girl is going somewhere educationally. She may 
have employment potential if you can get her into the 
right kind of employment situation. I hope— may we 
hae the lights, those are all the slides, I just wanted to 
see some of the kinds of kids I think— I hope we're 
directing our attention to. 

This is an issue and it's a real issue and 1 think as you 
get into your groups you better resolve it. Because 
some of you are not thinking about kids like this. 
These are bottom-of-the-barrel kids, and until you 
address your attention to them you're not going to be 
satisfying my internal needs in any way, and I hope I'm 
not back here ten years from now addressing this same 
problem again. 

Issue two that has been nibbled at by some of the 
other speakers are attitudes. Because I think they can 
arise to be the biggest constraints in this whole bag. 
Dick Sherr says he has some honest teachers who said, 
you know, I can't really teach that kind of kid. But 
there are a lot of educators out there who not only 
will be dishonest and not say that, they'll stay there 
and make life miserable for themselves and the kids. 
They'll go out and talk all over the community in 
addition and kind of wear your program down from 
within. There are professional attitudes that cannot 
relate to these kids and we've got a problem to know 
what to do with them. There are attitudinal problems 
among legislators who think these kids are not worth 
investing money in. You better get at it, find out 
what to do about it. For the first time down in Wash- 
ington we are having trouble with our education for 
the handicapped. As Paul Thompson knows, we have 
trouble with our funding programs. We used to just 
go around and say to those guys, you don't want us 
to go back to your community and say you are not in 
favor of voting for legislation and money for the handi- 
capped? And they'd say that big word that begins with 
A, certainly not. We don't want anybody to ever think 
of that and I'll vote for your bill. No more. You've 
seen vetoes come down the pike on every piece of legis- 
lation that we put through. We had two on vocational 
rehabilitation that used to pass unanimously. We 
couldn't even override the vetoes. It's a different day 
and age, and I think you have to realize if you're going 
to work for the handicapped, you've got to make a 
different kind of attack on the congressional level. The 
attitudes down there are really going to rise to haunt 
you. 

And lastly, I think you better be sure you are working 
on the attitudes of other parents in your community. 
Because they've been willing to let our special educa- 
tion programs thrive so long as they didn't interfere 
with the educational programs for their own children. 
And when it comes to having to choose between whether 
we're going to field the football team and pay for the 
band up there— or are we going to use our money to edu- 



cate these kinds of kids that we've been looking at— I 
think you might get some answers that don't make you 
feel too comfortable. So, I hope you are going to look 
at that. 

And I would like to know, for a last issue, how strong 
our commitment really is. I picked up in Utah, in 1 969, 
court ruling which looked like the same kind of thing 
that Pennsylvania got. So I'm thinking when I go to 
Utah in 1 974, we're going to have a complete delivery 
system in place, surely. Do you? This is the kind of 
issue you better get looking at before you start to look 
at options. 

Incidentally, don't feel badly, I don't know of any 
state that has all these beautiful things, good attitudes, 
lots of money, you know, and everything going for 
them. We're all in the same boat. But if you know 
what the problems are, I think you've a better chance 
of doing something about it. 

Good, I'm to the part on options. I've shown you my 
kids, which is the most important thing, so I 'm sure 
we're all off on the same foot. If you'll look at your 
sheets you'll find that in the options and issues group, 
we will be looking at options in three primary areas. 
We'll be looking at service delivery options: some you 
already know about, mainstreaming, self-contained 
classrooms, special schools, contractual relationships, 
but think about contracting with some new things, 
some new kinds of agencies that you haven't been 
contracting with before. Nonprofit ones you are 
pretty familiar with, but do you know there are some 
pretty good proprietary groups that are coming up and 
setting up programs for severely involved kids? These 
are profit-making groups. I don't care who does it, so 
long as it's done well and is of good quality. So don't 
pass up any options. 

Home instruction for an area like we're in now where 
you've lots of roll problems I think may be something 
you may want to take a really strong look at and we'll 
be looking in our group at something that I found in 
Wisconsin— a portage-type home training, home-teacher 
kind of delivery of service for kids where it's just 
impractical to try to bring them into groups. Obviously, 
I'd like them to come in for group instruction, but 
you can't always do that. 

We will be looking at a different way of training man- 
power—options for manpower starting with the solo 
regular teacher, going up to a new kind of delivery 
system that we call the transdisciplinary teacher— a 
teacher who has kind of picked the brains of a group 
of professionals and put a program together for a child 
in a new way and then teaches the mother how to 
deliver the service. This is something that we'll be 
talking quite a bit about. 

Options for funding— oh, I do want to read that part, 
because 1 think you just cannot think of laying all 
these costs on your school system and your school 
tax monies. I think you just cannot do it. The da\ is 
going to come when they're going to say no to \ ou, 
and I'm saying to you school people, even if it means 
employing somebody in your shop to find out how 



to access these other federal money streams, get with 
it. You can get your therapies paid for, sometimes 
your transportation paid for, your social services paid 
for, and I think you'd better learn how to play that 
game and access those monies in order to provide an 
adequate program for kids. 

Now, the whole thing is a whale of a big job, but it 
sure looks like a fun job to me. And I think this con- 
ference gives us an opportunity to get our piece of the 
action, and I'm just delighted to be here. 

Thank you. 



' 



98 



j 



THEMATIC STATEMENT ON WHAT IS RELEVANT EDUCATION 
BY DR. LOUIS BROWN 



I'm a teacher trainer, training teachers we hope will 
work with severely handicapped children. And I work 
at the University of Wisconsin in the Placement Center 
which is our version of a mental retardation center, or 
what used to be called a mental retardation center. 

We spend most of our time in the Madison Public 
Schools, and I was very pleased to hear one of my 
colleagues say that she also worked at Central Colony 
at one time because we are intensively involved with 
Central Colony. What we are trying to do is produce 
people, turn out people, train people who can go into 
public school systems and function creatively, effectively 
with children who we refer to as severely handicapped. 

Now, I think that because of the way we are set up in 
Madison, we get very few children that we get involved 
with that are multiply— what most people call multiply 
handicapped in the physical sense— in the sense of being 
deaf and blind. Most of the people we get when we go 
to Central Colony are behavior problems at one time in 
one form or other— self-stimulation, self-mutilation, 
this kind of thing. In public schools we get people who 
used to be called autistic, trainable, sub-trainables, pre- 
trainables, etc. Most of the physically handicapped in 
Madison attend a school that we are just starting to get 
into. I really felt that I should say that after hearing 
the second person before me say that she was vitally 
concerned with the developmental programs for 
the physically handicapped kids. 

We use, essentially, a task analysis model in the train- 
ing program. A substantial effort, as you might imag- 
ine, is directed toward securing people to work in these 
programs. As you probably know or are probably 
aware, the typical coeds at most universities don't 
come to the university with the intention of spending 
the rest of their professional lives with low-functioning 
children. Those people who do enroll in special educa- 
tion programs typically are interested in middle-class, 
emotionally disturbed kids, or mildly retarded kids. Or 
the big thing now, I guess, is to go into special learn- 
ing disabilities. We have had and continue to have a 
substantial problem trying to recruit the kind of people 
that we feel would be effective with the kind of chil- 
dren we are working with. And I think people in this 
area are interested in setting up teacher training pro- 
grams, so I think this might be a very relevant, very 
crucial point of discussion. 

We have a reasonably novel way of doing it. We have 
an introductory course and a methods course. Well, 
this semester, for example, ninety-five people are en- 
rolled in this course and all ninety-five are involved at 
Central-Wisconsin Colony or the Madison Area Associa- 
tion of Retarded Citizens or various other kinds of 
programs that relate to severely handicapped people. 
And what we try to do is to pick the people who are 
pretty good. Out of ninety-five we might find about 
thirty-five or forty who are doing something reason- 
able with the children that they are assigned to. And 
then what we try to do is essentially operate as college 
football coaches, and try to recruit them into what we 
feel is a program for these children. 



But I think there are some very important, some very 
key issues here. We feel that there is an inverse rela- 
tionship between the competencies, the intellectual 
abilities of the teachers and when compared to the 
development level of the children, the more handicapped 
the people, the more sophisticated the teacher may be. 

We use a task analysis model and we're extremely pre- 
cise. We structure classrooms, so we can avoid relating 
to typical behavior modification problems, management 
problems as much as possible, and focus on the develop- 
ment of academic skills. For those people concerned 
I would think we do very little with inferential data, 
most of the measurement systems we use in classrooms 
are related to trials to criteria, errors to criteria and 
that kind of thing. I realize that most of you people 
are thinking that we have severe management problems 
with these children and there is no doubt about it. We 
try to go the academic route, rather than the behavior 
modification route, and so we are very heavily into 
academic tasks-basic language, basic reading, basic 
math skills. We've made a substantial effort in the 
last five or six years in which we've attempted to 
develop an instructional program— reading materials, 
math materials, etc. 

The essential thing is we're teacher trainers and we 
work in a public school. We try to recruit, select, and 
train people to work with low-functioning children. 

Thank you. 



99 



THEMATIC STATEMENT ON PARENT EDUCATION AND THEIR ROLE 
BY DR. PHILLIP ROOS 



I'm going to start by talking about death. Most of us 
are going to face death sooner or later in ourselves as 
well as in our loved ones. When we face death in our 
loved ones, our society has developed a very palatable 
strategy for dealing with it. We go through a mourning 
reaction. We mourn. We grieve. There is an acute 
depression, and then we go happily on our way. When, 
however, a parent has a severely handicapped child, 
frequently that child symbolizes death. But it is an 
ongoing death, a continuing death to which there is 
often no end. .It is not surprising, therefore, that 
Simon Olshansky refers to parents of retarded children 
as suffering chronic sorrow. And he describes this as a 
normal, not a pathological reaction. 

To be sure, the parent of a severely handicapped child 
faces frustration every day of his life. But in addition 
to frustration, ladies and gentlemen, he faces some very 
deep and very meaningful existential conflicts. He is 
overwhelmed by feelings of helplessness, vulnerability, 
aloneness and the ultimate loss of immortality. It's 
not surprising, therefore, that the last twenty-five 
years have witnessed a new surgence of voluntary 
associations composed primarily of parents of handi- 
capped children. 

The roles and functions of these associations have 
changed. Their early foci was to supply mutual sup- 
port and to operate direct services for the children of 
the parents. Currently, the focus has changed to pub- 
lic information and education, to legislation, and the 
development of demonstration programs. And we are 
witnessing the emergence of new foci of activity. One 
of these is advocacy, citizen advocacy, agency advocacy, 
and as you have already heard, litigation. Parent 
associations have mounted suits in many of our states 
today. Finally, the setting of standards and the 
evaluation of programs. 

With the emergence of these new roles for parents it is 
not surprising that there has been a veritable plethora 
of parent training programs. For example, we have 
today some viable training programs to teach parents 
to become citizen advocates. I brought with me a 
thrilling film which I will show the little work group 
this afternoon to illustrate the kind of training that is 
available in this arena. 

There are training programs to train parents to become 
effective change agents, to evaluate knowledgeably 
programs and to articulate potently and meaningfully 
with administrators and professionals. There are 
currently programs available to train parents in the 

intricacies of legislative process, so they can go to 
the administrator and say, "Hey, baby, here's the 
way you get a hold of revenue sharing funds on the 
state and local level, to channel into programs tor the 
handicapped." 



There is, of course, compelling evidence regarding the 
impact of early intervention as it impacts on later 
cognitive proficiency. There is considerable evidence 
that the modest teaching strategies are significantly 
related to their children's performance. We now have 
a wide spectrum of parent training technology and 
materials, curricula, manuals, films, casettes, all this 
good stuff is readily available. 

The approaches are primarily in two categories— cogni- 
tive and/or language development, and of course 
behavior modification. And research data indicate 
some very significant positive results from both of 
these approaches. We can point to an impressive 
number of successful programs in which parents 
handicapped children are functioning as paraprofes- 
sionals. 

There have been some interesting expansions of the 
basic concept. For example, the training of foster 
parents, the training of mentally retarded persons to 
train younger mentally retarded persons. The training 
of parents to train other parents and so forth. 

I do not propose, ladies and gentlemen, in our intensive 
little work sessions, to bombard you with any of this 
material. You will be given annotated bibliographies 
and summarized program descriptions in the work 
group. Well, parents are obviously ready to assume 
some key roles as trainers and educators, as planners, 
as evaluators, as advocates and as change agents. But 
we must face the fact, ladies and gentlemen, that the 
days of begging and pleading are past. Parents today 
are overwhelmed with feelings of impatience. They 
want action and they want it yesterday. We must 
realize, too, that there is a need for change in some of 
our professional attitudes towards parents. And there 
is a need for change in some parental attitudes for 
professionals. I'm convinced that opportunities must 
be created to foster a viable symbiosis among parents, 
professionals and other administrators. 

I view this conference, and specifically the work ses- 
sions, as arenas— arenas in which we will create specific 
programs and practical strategies to capitalize on the 
forces that are existent in the societal matrix today and 
that will capitalize on the existing technology. If we 
succeed in creating these types of opportunities then I 
am convinced that the severely handicapped in our 
land will reap rich benefits. 



100 



Undoubtedly the greatest impact of training programs 
is in the area of training parents to be paraprofessionals. 
They are functioning as members of program teams. 
Everybody is overwhelmed by the lack of professionally 
trained personnel, so parents are moving into this 
arena with some degree of enthusiasm. 



Suggested Program Plan Outline for 



(workshop topic) 



102 



NEED 



What is needed to improve existing 
services or create new ones relative 
to topical area? 

(30 minutes} 



Group brainstorm (list): 



for Wednesday evening, 7:30 - 10:00 PM 



BLOCKS (problems/contradictions) 



What stands in the way of achieving a 
more effective delivery of services 
on topical area? 

(30 minutes) 



Group brainstorm (list): 



Gestalt above into 4 Blocks: 

1. 

2. 

3. 

4. 



GOALS (achievable objectives) 



What would be a set of four reason- 
able objectives or goals for the next 
twelve-month period? The needs and 
blocks may be re-articulated into 
goal statements. (1 hour) 



Group brainstorm (list): 



Gestalt above into 4 Goals: 
Goal 1. 
Goal 2. 
Goal 3. 
Goal 4. 



Suggested Program Plan Outline for 



for Thursday morning, 10:00 AM • 2:00 PM 



-(workshop topic) 



STRATEGIES (sub-goats) 


TACTICS (specific activities) 


TECHNICAL ASSISTANCE PRODUCTS (tools) 


What broad approaches or attack plan 


What concrete first steps would be 


What kind of tools, models, plans, ' 


could be designed to achieve goals? 


outlined to give the practical, tactical 


etc., are required to enable the 


Keep one-year timeline in mind. 


plan necessary to achieve the goals? 


tactical plan to be carried out? ; 


(30 minutes) 


(1 hour) 


(1 hour) 


Two or more strategies per goal: 


Two or more tactics per strategy: 


Brainstorm (list): 


Goal 1: 


Goal 1 ; Strategy 1 
Tactic: 




Strategy: 


Tactic: 
Goal 1; Strategy 2 




Strategy: 


Tactic: 
Tactic: 
Goal 2; Strategy 1 




Goal 2: 


Tactic: 
Tactic: 




Strategy 


Goal 2; Strategy 2 
Tactic: 




Strategy 


Tactic: 
Goal 3; Strategy 1 
Tactic: 
Tactic: 




Goal 3: 


Goal 3; Strategy 2 


Relate to goals or tactics: 


Strategy 


Tactic: 






Goal 4; Strategy 1 


Goal 1: 


Strategy 


Tactic: 






Tactic: 


Goal 2: 




Goal 4; Strategy 2 




Goal 4: 


Tactic: 
Tactic: 


Goal 3: 


Strategy 




Goal 4: 


Strategy 




(use other side or extra sheets) 



Suggested Accountability Plan Outline for 



for Thursday evening, 7:30 • 10:00 PM 



-(workshop topic) 



FORCES (to carry out program) 



Who are the individuals, groups, organ- 
izations, etc. who would be most suited 
to implement tactical plan? Or do the 
forces have to be created? 

(30 minutes) 



linstorm (list): 



Relate above data to goals: 
Goal 1: 
Goal 2: 
Goal 3: 
Goat 4: 



EVALUATION STRATEGIES (actions) 



What kind of evaluation is required to 
measure effectiveness of specific 
program? 



(45 minutes) 



rainstorm (list): 



Relate above data to goals: 
Goal 1: 
Goal 2: 
Goal 3: 

Goal 4: 



EVALUATION NEEDS (products) 



What kind of evaluation tools, models, 
plans, etc., are required to enable 
the evaluation strategies? 

(45 minutes) 



3rainstorm (list): 



Relate above data to previous gestalt 
(goals/evaluation strategies) 
Goal 1 : 

Goal 2: 

Goal 3: 

Goal 4: 



Suggested Timeline Design for 
Topic. 



for Friday morning, 10:00 - 1 1 :30 AM 

Possible Agenda: 

1 . General discussion on how to apply the wisdom of the conference to the needs of this state. 

2. Would any of the goals or tactics need to be stated differently for this state? 

3. Divide into 5 groups (by topic) and write a one-year timeline on how this state might begin to move 
concretely toward achieving stated goals. Timeline the tactics from previous workshop (Thursday AM) 

in a rational flow so that the goals from first workshop might be realized over a 1 2-month period. (1 hour) 



YEAR ONE: 1974-75 



103 



SPRING (March-May) 


SUMMER (June-August) 


FALL (September-November) 


WINTER (December-February) 


GOALS 


Tactics: 


Tactics: 


Tactics: 


Tactics: 


1. 

2. 
3. 
4. 











CONFERENCE EVALUATION 



Introduction: 

An evaluation questionnaire was distributed to participants at the close of the Friday morning 
workshops. The conference had a total of 257 participants, speakers and staff members during 
the 2V2 day period. Of the total, it was hoped that the 21 5 actual workshop participants would 
respond to the evaluation. In actuality, 148 participants (or 70%) answered the questions. The 
other 30% can be accounted for by those who were out of the group at the time, those who 
had to leave early, or who simply forgot. The bar graphs below represent the number of responses 
to each category; they are reported in percentages. The last part of the evalutation is a synthesis 
of the last two questions of the evaluation. Of the 148 persons who responded, all of their 
comments are represented in as close to original form as apossible. 



91 



Question 1 : Were the issues relating to the 
provision of appropriate educational services 
to the severely multiply handicapped clearly 
articulated during this conference? 

Comment: As Figure 1 shows, the goals were 
seen generally as fairly well articulated. About 
2/3 of the participants marked either 4 or 5 in 
response to the question. 



41 



not at slightly some- clearly completely 

all what and in 

detail 



106 



Question 2: Are you leaving the conference 
with practical first steps outlined for imple- 
menting or strengthening educational services 
to the severely multiply handicapped? 

Comment: Eighty percent of the participants 
responded "Yes", 17% "No", and 3% made 
some other, somewhat ambivalent response 
(yes and no, partially, etc.). 



_ 



Question 3: Was the conference relevant to you 
and your work with handicapped children? 

Comment: About three-fifths of the 
participants (61%) responded "CON- 
SIDERABLY" or "EXTREMELY RELEVANT' 
the mean response was between "SOME- 
WHAT and "CONSIDERABLY" relevant. 



63 



44 



not at 
all 



12 



27 



little 



some- 
what 



consider- 
ably 



extremely 
relevant 



Question 4: Did you receive ample preconference 
information to prepare you for the conference? 

Comment: This appears to be an area 
with potential for improvement for 
future conferences. Half of the parti- 
cipants responded "No", the other 
half "Yes". 



107 



Question 5: How effective were the keynote 
speakers in stimulating the participants and 
in keeping the conference in focus? 



54 



21 



50 



23 



noi 
effective 



little 



some- 
what 



consider- e\tremel\ 
abh 



108 



Question 6: Please circle the number corresponding to 
the grouping in which you participated. 



24 


35 


26 


38 


30 


43 


32 


46 


36 


53 


148 


215 



Comment: The first column of numbers below indicates the number of 
respondents to evaluation in each workshop group. The second column 
is an estimate of how many participants were in each group, assuming 
that non-responders (early departures, forgetters, etc.) were propor- 
tionally distributed among the groups. 

1. Systematic Delivery System (Richard Sherr) 

2. Identification of Constraints (Albert Berkowitz) 

3. Options for Unserved Children (Elsie Helsel) 

4. What is Relevant Education (Louis Brown) 

5. Parent Education and Their Role (Philip Roos) 

Totals 



Question 7: Keeping in mind the four times your topical group worked 
together, please respond to the following items: 

a. Did you have ample opportunity to express your views relating 
to the topic? 

Comment: A very encouraging 90% of the respondents answered "Yes" 
to this question. Of the 10% who responded "No," many qualified 
their answer by such statements as "I'm not very talkative" or "It's 
impossible to discuss this topic enough." 

b. Were you presented with practical information that you could 
readily apply to your work situation? 

Comment: Precisely two-thirds of the respondents answered affimatively. 
Although there were a number of conference participants without a work 
situation in which to apply the information (parents, for example), this 
appears to be an area of consideration for future workshops. 

c. Do you feel that the issues related to your topic and severely, 
multiply handicapped children were clearly identified and dealt with? 

Comment: Fifty-three percent responded "Yes," 41% "Partially," and 
6% "No." 



_ 



_ 



Question 8: Please rate the following: 



A. Conference facilities 



74 



14 







n 



so 



poor lair adequate good excellent 



B. Meals served at conference 



69 



26 



33 



poor lair adequate good excellent 



109 



C. Conference time scheduling 



14 



14 



}3 



33 



poor lair adequate good excellent 



110 



Synthesis of Conference Evaluation 

Both positive and negative comments on conference evaluations gestalted into the 
two main categories of Format and Content, with minor differences in sub-categories, 
and no apparent distinguishing pattern among topical groups. 

FORMAT 

Question 9: Please list three things that you would change or do differently if 
a similar conference were to be planned again. 

A. Scheduling : 101 responses. 

Included under this heading were 51 calls for the elimination or 
earlier scheduling of evening workshop meetings; 17 calls for less 
time allotted to keynoters, usually with the suggestion that there 
be only one; 1 1 suggestions that the cocktail hour be scheduled at 
the end of the working day, not between sessions; and 7 requests 
for less rigid workshop assignment so that participants could float 
between topic groups. Also included were comments regarding more 
free time for interaction, earlier beginnings in the morning, 
structured sightseeing, and more adherence to time schedules. 

B. More Small Group Process Interaction: 22 responses. 

Included under this heading were calls for more expertise in group 
process on the part of topical resource leaders, for more facili- 
tators other than the resource leaders, and for smaller groups. In 
short, improvement of the process, rather than deletion of it. 

C. More State Focus: 20 responses. 

Responses under this heading implied a positive attitude toward 
the state focus of the conference, but generally felt the focus to 
be inadequate. Included were calls for periodic state meetings 
throughout the conference, more time spent with state groups at the 
end of the conference, more input from the states as to specific 
state goals and needs before the conference, and workshop process 
forms built according to stated needs and goals of the states. 

D. Accommodations: 10 responses. 

Complaints here included inadequate breakfast service in the coffee 
shop, one description of the food as unpalatable, crammed coffee- 
break area, and a desire for a No Smoking rule. 

Question 10: List three things that you would not change or do differently 
if a similar conference were to be planned again. 

A. Scheduling, Organization, and Planning: 80 responses. 

Of these responses, 28 specifically applauded the inclusion of 
evening workshops as adding to the commitment of participants 
and enabling goals to be reached. Other responses emphasized the 
excellent work of the conference coordinator and administrators, 
the completeness of pre-conference planning, the strict adherence 
to detail, the organization of working groups and breaks, the per- 
manent assignment to specific topical groups, and the amount of time 
spent working. 



111 



B. Small Group Process Interaction: 78 responses. 

Included under this heading were 25 statements of specific praise 
for the enablers and recorders of the small groups. 53 responses 
concerned the small group format in general, considering it thoroughly 
enjoyable as well as efficient, and crucial to the success of the conference. 
Appreciation was often expressed for the opportunity to interact 
with such a variety of people. 

C. Accommodations: 33 responses. 

Especially positive in this category was the convenience of housing 
the conference in the same hotel where participants roomed and ate; 
also included were positive comments on the food, the breaks, the 
cocktail hours, the locality, and the general atmosphere, friendliness, 
and hospitality of the conference. 

D. State Focus: 13 responses. 

Included here was appreciation for the specific invitations of state 
personnel, and the time allotted to state workshops. 

CONTENT 

Question 9: Please list three things that you would change or do differently if a similar conference 
were to be planned again. 

A. More Interdisciplinary Orientations: 47 responses. 

Under this heading were included calls for more opportunity to 
interchange with the total conference attendance as well as small 
topical groups, for more focus on educators by other professionals, 
and for more local professionals. 

B. More Practicality: 35 responses. 

Under this heading were included calls for more briefing of resource 
leaders as to specific geographical problems, more technical assistance 
to individual states for implementation, demonstrations, exposure to 
existing programs, visits to actual facilities, and more specific goals 
for the conference. 

C. More Clarity and Synthesis of Workshop Information: 33 responses. 
Under this heading were included calls for more and earlier pre- 
conference delineation of goals, workplan, and definitions of topics/ 
issues, more structured clarification and demonstration of the model 
with concrete examples, and more opportunity for synthesis in large 
topical groups and in the total conference group. 

D. More Resource Leader Input: 10 responses. 

These responses usually meant more lecture time as opposed to the 
small group process. In one sense, these responses were actually 
positive evaluations of the resource leaders. 

Question 10: List three things that you would not change or do differently if a 
similar conference were to be planned again. 

A. Leadership Input: 42 responses. 

Under this heading were included applause for the keynoters' speeches 
and informal dialogue, the resource leaders' thematic statements 
as well as their performance in topical groups. 



112 



B. Quality of Coverage, Relevance, and Scope of Issues/Topics: 27 responses. 
Under this heading were grouped praise for the localized approach 

with inclusion of national ramifications, for the system of topical 
breakdown, for the relevance, scope, and general expertise experienced. 

C. Practical Goal Orientation: 10 responses. 

Included under this heading were specific statements of appreciation 
for a true "working conference," and the attempt to get at essentials 
and work toward a practical program goal, which could be carried back 
to the states. 



The 16 Most Commonly Recorded Specific Statements 

Question 9: Please list three things that you would change or do differently 
if a similar conference were to be planned again. 

Totals 

1. Night meetings too much: start earlier, eliminate. 51 

2. Have more small group work; smaller groups. 21 

3. More and earlier pre-conference information on goals and 
relevant definitions. 20 

4. Fewer keynoters with less time allotted. 17 

5. More diversified, interdisciplinary approach: specifically 
parents, legislators, paraprofessionals, private agencies, 

and medical/health-care personnel. 15 

6. More practical demonstration of the individual teaching of 
the severely multiply handicapped, with specific educators, 
visual aids, and visits to demonstration sites. 12 

7. More time in state meetings-daily and at the end. 13 

8. More concrete clarification of the model, with presentation 
of an example; more structured workgroups on the model; 
more precisely defined topic areas. 12 

9. Cocktail hour after all working sessions over, not between 
sessions. 1 1 

10. More input from resource leaders (lecture). 10 

11. More provision for dissemination of complete information 
to all participants during the conference: more copying 
machines, recorders, blackboards, etc., with periodic dis- 
semination of handouts from each topic group to all parti- 
cipants to avoid duplication 9 

12. Opportunity to float between topic groups, or rotation by 
topic leaders. 7 



113 



13. More group process expertise in resource leaders. 6 

14. More presentation of programs in existence and effective 
in other states; more interstate interchange, with demon- 
strations, slides, etc. 6 

15. Have more educators, fewer bureaucrats in the keynoters; 
more utilization of challenging, local people. 6 

16. Less orientation toward administrators, more toward ser- 
vice delivery people directly involved in dealing with the 
problems. 5 

The 16 Most Commonly Recorded Specific Statements 

Question 10: List three things that you would not change or do differently if 
a similar conference were to be planned again. 

Totals 

1 . Small group workshop process, and emphasis as a 

working conference. 41 

2. Scheduling; especially the evening meetings, and time- 
lines. 28 

3. Efficiency, and competence of all RMRRC enablers and 
recorders. 25 

4. Organization, which was evident in the smooth operation 

of everything. 17 

5. Accommodations: breaks, lunches, cocktails, service, etc. 18 

6. Keynoters' input on federal level. 18 

7. Competence of resource leaders. 14 

8. Leadership and coordination of the conference. 13 

9. State workshop time and focus. 13 

10. Variety of people and professionals attending the conference. 10 

1 1 . Scope and relevance of subject matter, coverage of issues, 
integration of local and national concerns. 9 

12. Thematic Statements. 7 

13. Packaged materials received. 7 

14. Working lunches. 7 

15. Attempt to get to essentials and work toward practical 

goals. 7 

16. Common workshop format sheet. 5 



DIRECTORY 

CONFERENCE ON THE SEVERELY MULTIPLY HANDICAPPED- 

WHAT ARE THE ISSUES? 



Nancy Abraham 

State Board of Education 

University Club Bldg. 

Salt Lake City, Utah 84111 

Darlene Adams 
Exceptional Childrens Center 
Utah State University 
Logan, Utah 84321 

Joyce Aegerter 
Asst. Director Info. Services 
Council for Exceptional Children 
1411 Jefferson Davis Hwy. 
Arlington, Virginia 22202 

Ronald L. Allen 

Superintendent 

Box 47 

Shepherd, Montana 59079 

Carla Anderson 
Jordan Resource Center 
433 East Center St. 
Midvale, Utah 84047 

Donna L. Anderson 

President, Community Foundation 

368 E. 3rd South 

Salt Lake City, Utah 84111 

Joan Anderson 

742 University Village 

Salt Lake City, Utah 84108 

Fred Appelman 

Regional Coordinator, Spec. Ed. 

SEIMC 

915 S. Ave. West 

Missoula, Montana 59701 

Barbara Ashford 

RMRRC 

2363 Foothill Drive, Suite G 

Salt Lake City, Utah 84109 

Richard Baer 

Exceptional Children Center 
Utah State University 
Logan, Utah 84321 

Audrey Ballinger 

4943 Eastridge Lane 130 A 

Salt Lake City, Utah 84117 

Kent Barber 
7221 Poplar St. 
Boise, Idaho 83704 

Ross H. Barefoot 

Counselor 

Box 953 

Baker, Montana 59313 



Bruce Barnson 
Coordinator, M.R. Program 
3708 El Glen Avenue 
Salt Lake City, Utah 84120 

Barbara Barton 

Principal 

Hartvigsen School for Multiple Hdcp. 

Granite School District 

340 E. 3545 So. 

Salt Lake City, Utah 84115 

George Bateman 
Ogden-Weber Ed. Center 
1100 Orchard Avenue 
Ogden, Utah 84404 



Dereld Baxter 
P.O. Box 890 

Mountain Home, 



Idaho 83647 



Kenneth Beardall 
Director, Training Center 
P.O. Box 266 
Mona, Utah 84645 

Carol Beasley 
Utah State University 
Dept. of Special Ed. 
Logan, Utah 84322 

Ruth Beaudoin 

Generalist 

Tooele Central School 

55 N. 1st W. 

Tooele, Utah 84074 

Nancy Bell 

Multihandicapped Teacher 

Montana Center for Handicapped Children 

Billings, Montana 59101 

Tom Bellamy 

Training Severely Handicapped 
Center on Human Development 
University of Oregon 
Eugene, Oregon 97403 

Albert Berkowitz 
Dept. of Mental Health 
190 Portland St. 
Boston, Mass. 02114 

Thora Bills 

264 East 400 South 

Provo, Utah 84601 

Roberta Bisterfeldt 

Teacher 

3340 Navarre 

Casper, Wyoming 82601 



116 



117 



Grant Bitter 

Faculty, Dept. Special Education 

218 Milton Bennion Hall 

University of Utah 

Salt Lake City, Utah 84112 

Orson L. Bowler 
Supt. of Schools 
Eastside School Dist. 201 
Preston, Idaho 83263 

Pat Boyer 

Regional Coordinator 
Special Education Center 
801 2nd Avenue North 
Great Falls, Montana 59401 

Dave Bradford 

RMRRC 

2363 Foothill Drive, Suite G 

Salt Lake City, Utah 84109 

Duane Bresee 

Special Education Coordinator 

Box 607 

Richfield, Utah 84701 

Greg Bronson 
P.E. Specialist 
Boise Public Schools 
1 204 Fort Street 
Boise, Idaho 83702 

Martie Bronson 

Director of Special Education 

Boise Public Schools 

1204 Fort St. 

Boise, Idaho 83702 

Louis Brown 
427 Education Bldg. 
University of Wisconsin 
Madison, Wisconsin 53705 

Louis F. Brown 
Teacher Training 
Division of Special Ed. 
University of Iowa 
Iowa City, Iowa 52240 

Ben Bruse 

Utah State Dept. of Education 

University Club Bldg. 

Salt Lake City, Utah 84111 

Mary Buchanan 

Faculty, Dept. of Special Education 

218 Milton Bennion Hall 

University of Utah 

Salt Lake City, Utah 84112 

Richard Budd 

Director, Vocational Training 
Utah State Training School 
American Fork, Utah 84003 



Judy Ann Buffmire 

Director 

RMRRC 

2363 Foothill Drive, Suite G 

Salt Lake City, Utah 841 09 

Joyce Burnet 

Health Educator 

4750 N. Sheridan Road No. 713 

Chicago, Illinois 60640 

Don Byers 

Assistant Supervisor, Spec. Ed. 
801 2nd Avenue North 
Great Falls, Montana 5940I 

Jim Byrnes 

Project TURN 

2952 South 7th East 

Salt Lake City, Utah 84106 

Larry Carlson 
NWSEIMC 
University of Oregon 
Eugene, Oregon 97403 

Donna Carr 

Resource Specialist 

Utah State Board of Education 

University Club Building 

Salt Lake City, Utah 84111 

Robyn Carter 

RMRRC 

2363 Foothill Drive 

Salt Lake City, Utah 84109 

Glendon Casto 
Psychologist 

Exceptional Child Center 
Utah State University 
Logan, Utah 84321 

Verl Cazier 

Rt. 63 Box 430 

Lander, Wyoming 82520 

Robert Charlton 

Director, Special Education 

48 E. 1st N. 

St. Anthony, Idaho 83445 

Philip C. Chinn 

Faculty, Dept. of Special Education 

218 Milton Bennion Hall 

University of Utah 

Salt Lake City, Utah 84112 

Roger Christensen 

State of Utah 

Division of Family Services 

2835 S. Main 

Salt Lake City, Utah 84115 






Geraldine Clark 

M.R. Specialist 

Utah State Department 

University Club Building 

Salt Lake Cty, Utah 84111 

Barbara Colvin 
Clinical Service Bldg. 
Regional Resource Center 
University of Oregon 
Eugene, Oregon 97403 

John Comba 

Director, Special Education 
State Department of Education 
Boise, Idaho 83704 

Trudy Comba 
Boise State College 
1910 College Blvd. 
Boise, Idaho 83707 

Lester W. Coon 

Asst. Director, Special Education 

340 E. 3545 South 

Salt Lake City, Utah 84115 



Benny Domenici 

Supervisor of Multiple Handicapped 
Utah State Training School 
American Fork, Utah 84003 

Terrell Dougan 
President, UARC 
1326-3rd Avenue 
Salt Lake City, Utah 84103 

Vonda Douglass 
Speech Pathologist 
Utah State University 
Logan, Utah 84321 

John Dracon 

Supt. of Schools 

School District 8 

Box C 

White Sulphur Springs, Montana 59645 

Clif Drew 

Assoc. Prof, of Special Education 

229 Milton Bennion Hall 

University of Utah 

Salt Lake City, Utah 84112 



Jim Crosson 
Clinical Service Building 
Regional Resource Center 
Eugene, Oregon 97403 

Jo Cunningham 

Communication Specialist 

BYU - Provo Demonstration School 

563 E. 300 N. 

Provo, Utah 84601 



M. Dumaresq 

Coordinator of Behaviorial Education 

Center on Human Development 

University of Oregon 

Eugene, Oregon 97403 

M. A. Dunningan 

Coordinator of Special Education 

311 North 10th Street 

Coeur d'Alene, Idaho 83814 



Margaret Davis 
Placement Coordinator 
Jordan Resource Center 
433 E. Center St. 
Midvale, Utah 84047 

W.C. Davis 

EMR-TMR 

P.O. Box 237 

Lava Hot Springs, Idaho 83246 

Ronald J. Dent 
School Psychologist 
Rt. 2 Victory Road 
Meridian, Idaho 83642 

Debbie DeVries 

273 E. Capitol Blvd. No. 11 

Salt Lake City, Utah 84103 

Katie Dixon 

2952 South 7th East 

Salt Lake City, Utah 84106 



Elmer Dyekman 
Asst. Director 
Special Education 
1100 Richardson Court 
Laramie County School 1 
Cheyenne, Wyoming 82001 

Kathie East 

EMR Teacher 

562 Madison 

Twin Falls, Idaho 83301 

Jerry Edgington 

Director of Special Education 

School Psychologist 

48 East 1st North 

St. Anthony, Idaho 83445 

Shauna Edmond 

RMRRC 

2363 Foothill Drive 

Salt Lake City, Utah 84109 

Elfrieda Ehlers 
723 Northwest 5th 
Pendleton, Oregon 97801 



118 



Vance Engleman 

RMRRC 

2363 Foothill Drive, Suite G 

Salt Lake City, Utah 84109 

Robert L. Erdman 

Faculty, Dept. of Special Ed. 

218 Milton Bennion Hall 

University of Utah 

Salt Lake City, Utah 84112 

Terry Felts 

2475 Leslie Avenue 

Idaho Falls, Idaho 83401 

Marvin Fifield 

Director, Exceptional Children Center 

Utah State University 

Logan, Utah 84321 

Mary Fogg 

Special Education Curriculum 

1 243 West 6th South 

Salt Lake City, Utah 84104 

Rowena Foos 

Asst. Prof, of Special Education 

1216 Princeton 

Billings, Montana 59102 

Mike Fredrickson 
Resource Coordinator 
501 Roxy Lane 
Billings, Montana 59101 

Cy Freston 

Faculty, Department of Special Education 

218 Milton Bennion Hall 

University of Utah 

Salt Lake City, Utah 84112 

Shirley Fritchoff 

Executive Director 

United Cerebral Palsy of Idaho 

1508 N. 11th Street 

Boise, Idaho 83702 

Jim Furbee 

Doctoral Intern 

Mountain-Plains Reg. Center 

1346 Lincoln 

Denver, Colorado 80203 

George E. Gardner 
Admin. TMR 
500 S. Walsh Dr. 
Casper, Wyoming 82601 

John Gardner 

Principal, Sheltered Workshop 

4868 S. State 

Murray, Utah 84107 



119 



Sue Geary 

Teacher - Training School 
327 N. 1060 West 
Provo, Utah 84601 

Mary L. Gehrke 
1 245 Merrett Drive 
Idaho Falls, Idaho 83401 

Peg K. Gieser 

Head Teacher 

Box 375 

Silverton, Idaho 83867 

Joanne Gilles 
Media Specialist 
P.O. Box 333 
Park City, Utah 84060 

Lamar Gordon 

Coordinator, Office of Exceptional Children 

State Dept. of Education 

Capitol Bldg. 

Cheyenne, Wyoming 82002 

Donna Gough 

RMRRC 

2363 Foothill Drive 

Salt Lake City, Utah 84109 

Chuck Griffin 
Director, Special Programs 
Albany County School Dist. 
1948 Grand Avenue 
Laramie, Wyoming 82070 

Christine Grunander 
School Staff 

Ogden-Weber Edu. Center 
1 100 Orchard Avenue 
Ogden, Utah 84404 

B. John Hale 

Asst. Prof., Mental Retardation 

1214 S.E. Maiden 

Portland, Oregon 97202 

Dennis Hall 

Coordinator, Special Education 

147 E. 5065 South 

Murray, Utah 84107 

Michael L. Hardman 

2878 S. 2475 East 

Salt Lake City, Utah 84109 

Susan Harrison 

RMRRC 

2363 Foothil Drive 

Salt Lake City, Utah 84109 

Gay Hatch 

Principal 

815 N. 800 West 

Provo, Utah 84601 



120 



Ralph Haws 

Jordan Resource Center 
433 East Center St. 
Midvale, Utah 84047 

S.P. Hencley 

Dean, Graduate School of Education 

Milton Bennion Hall 

University of Utah 

Salt Lake City, Utah 84112 

Elsie Helsel 

Washington Representative 
United Cerebral Palsy Assn. Inc. 
188 Longview Heights Road 
Athens, Ohio 45701 

Eve Hendrix 

Asst. Principal 

Utah State Training School 

American Fork, Utah 84003 

Hugo Hendrickson 

Supt. Crook County School, Dist. 1 

P.O. Box 536 

Sundance, Wyoming 82729 

Sterlin Hollingshead 
Division of Family Services 
P.O. Box 708 
Ogden, Utah 84402 

Jerry Hoover 

Superintendent 

419 Linden 

Glendive, Montana 59330 

Chiya Horuichi 

3451 South Ash Street 

Denver, Colorado 80222 

Herman J. Houston 

Conductor of Special Education 

1 552 West 200 North 

P.O. Box 725 

Cedar City, Utah 84720 

Sue Houston 
Teacher/Deaf -Blind 
Utah State Training School 
American Fork, Utah 84003 

William Hudson 
School Staff 

Ogden-Weber Ed. Center 
1100 Orchard Avenue 
Ogden, Utah 84404 

Herb Huestis 

Asst. Prof., Dept. of Special Education 

Route 1, Box 40 

Troy, Idaho 83871 

Jeanne Hughes 
Consultant Deaf-Blind 
1346 Lincoln 
Denver, Colorado 80203 



Doris Hutton 
School Psychometrist 
1948 Grand Avenue 
Laramie, Wyoming 82070 

Ken Jens 

Associate Professor 

4091 Rue St. Germain 

Stone Mountain, Georgia 30083 

J. Lorin Jex 

Director, Professional Services 
Utah State Training School 
American Fork, Utah 84003 

Merrill Johnson 

RMRRC 

2363 Foothill Drive 

Salt Lake City, Utah 84109 

James Jex 

Supervisor, Perceptual Motor 
Utah State Training School 
American Fork, Utah 84003 

William Johnston 

Ed. Program Specialist 

Bureau of Education for the Handicapped 

400 Maryland Ave., S.W. 

Rm. 2010 ROB 

Washington, D.C. 20202 

Aleen H. Jones 

Coordinator for Multiply Handicapped Students 

Utah School for the Deaf 

846 20th St. 

Ogden, Utah 84401 

J. Dean Jones 

Program Director 

Utah State Training School 

American Fork, Utah 84003 

Richard Kimber 
Director, Pupil Personnel 
Court House 
Brigham City, Utah 84302 

David M. Kirk 

Director, Dept. of Rehab. Service 
Wyoming State Training School 
Lander, Wyoming 82520 

Donald F. Kline 

Chairman, Dept. of Special Education 

Utah State University 

Logan, Utah 84322 

R. Ramon Kohler 

Speech & Hearing 

Dept. of Speech & Hearing 

Box 331 1 -University Station 

Laramie, Wyoming 82071 



Betty J. Kohstoe 
School of Spec. Ed. & Rehab. 
University of Northern Colorado 
Greeley, Colorado 80639 

Fred Krause 

Executive Director 

President's Committee on Retardation 

Room No. 2614-ROB-3 

7th and D Streets, S.W. 

Washington, D.C. 20202 

Mrs. Sharry Lachman 
Health Educator 
4750 N. Sheridan, Apt. 816 
Chicago, Illinois 60640 

Robert N. LaGarde 
Regional Coordinator 
Glendive Medical Center 
Glendive, Montana 59330 

Ray A. Lamb 

School Psychologist 

School District 193 

P.O. Box 890 

Mountain Home, Idaho 83647 

Gary Landers 

Director 

Stride Learning Center 

3821 Evans Avenue 

Cheyenne, Wyoming 82001 

Anthony J. LaPray 
Faculty, Special Education 
218 Milton Bennion Hall 
University of Utah 
Salt Lake City, Utah 84112 

Eldrid S. Larsen 

Director, Special Education 

Logan City Schools 

101 West Center 

Logan, Utah 84321 

Glenn Latham 
3240 Dapple Way 
Eugene, Oregon 97403 

Carol LaValley 

TMR Teacher 

Emerson School 

614 W. Lamine 

Bozeman, Montana 59715 

Douglas W. Laws 

Audiology 

University of Wyoming 

Box 331 1 -University Station 

Laramie, Wyoming 82071 



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Orrie Leabo 

Director of Special Education 
600 Friberg Avenue 
Fergus Falls, Minn. 56537 

Ann Leming 
133 K Street 
Salt Lake City, Utah 84103 

Mary Dell Long 

1301 Bradley 

Laramie, Wyoming 82071 

Jerry Lerohl 
Ogden-Weber E. Center 
1100 Orchard Avenue 
Ogden, Utah 84404 

Jan Loveless 

245 S. 8th East 2 

Salt Lake City, Utah 84102 

Edith Lundberg 

608 South 6th 

Laramie, Wyoming 82071 

Julie Lutes 

Special Project Coordinator 

Idaho Assoc, for Retarded Citizens 

P.O. Box 816 

Boise, Idaho 83701 

Francis Lynch 

Division of Developmental Disabilities 

Room 3058 

330 C Street, S.W. 

Washington, D.C. 20201 

Florence D. Magleby 
L D Specialist - Utah State 
Board of Education 
University Club Building 
Salt Lake City, Utah 84111 

Jan Mallett 

RMRRC 

2363 Foothill Drive 

Salt Lake City, Utah 84109 

Edwin Martin (Telephone Address) 
Associate Commissioner 
Bureau of Education for the Hdcp. 
7th & D Streets, S.W. 
Washington, D.C. 20202 

Julie Martineau 
Materials Specialist 
NWSEIMC/Clinical Services Bldg. 
University of Oregon 
Eugene, Oregon 97403 

Doris Mason 

RMRRC 

2363 Foothill Drive, Suite G 

Salt Lake City, Utah 84109 



Kitty Mason 

State of Utah— Division of Family Svcs. 

333 So. 2nd East 

Salt Lake City, Utah 84111 

Jeanine Matney 
IRC Consultant/Facilitator 
405 State Office Bldg. 
Denver, Colorado 80203 

Paul Matthews 

Special Education Coordinator 

Education Center 

3115 Pole Line Road 

Pocatello, Idaho 83201 

Gil Mauthe 

Executive Director 

Idaho Assn. for Retarded Children 

P.O. Box 816 

Boise, Idaho 83701 

Leon McCarrey 

Utah System of Higher Education 

1201 University Club Bldg. 

136 East South Temple 

Salt Lake City, Utah 84111 

Thomas L. McCartney 
State Resource Coordinator 
Project Outreach-Wyoming 
Capitol Bldg. 
Cheyenne, Wyoming 82002 

Mack McCoulskey 

RMRRC 

2363 Foothill Drive, Suite G 

Salt Lake City, Utah 84109 

llene McKenna 

RMRRC 

2363 Foothill Drive, Suite G 

Salt Lake City, Utah 84109 

Sandra Meinert 

1 765 Harvard Avenue 

Salt Lake City, Utah 84108 

Genevieve Merrill 

State Director Foster Grandparents 
State House - Capitol Annex No. 3 
Boise, Idaho 83720 

Carol Michaelis 

Faculty, Special Education 

218 Milton Bennion Hall 

University of Utah 

Salt Lake City, Utah 84112 

June Miller 

Mentally Retarded— Physically Hdcp. 

Box 425 

Boulder, Montana 59632 



Jeanette Misaka 

Faculty, Special Education 

218 Milton Bennion Hall 

University of Utah 

Salt Lake City, Utah 84112 

Richard Moe 

Special Education Director 

Special Services Bldg. 

Miles City School Dist. No. 1 

421 North 10th 

Miles City, Montana 59301 

Carolyn Moore 
Clinical Service Building 
Regional Resource Center 
Eugene, Oregon 97403 

Jean Moore 

RMRRC 

2363 Foothill Drive 

Salt Lake City, Utah 84109 

Michelle Morrison 

Planning Director 

Developmental Disabilities Planning 

DECS, Statehouse 

Boise, Idaho 83720 

Walt Mueller 

Administrative Assistant 

Special Programs 

Campbell County School District 

1000 West Eighth Street 

Gillette, Wyoming 82716 

Patricia Mullen 

TMR - Teacher 525 Dell Place Apt. 4 

c/o Emerson School 

Bozeman, Montana 59715 

Sally Muncey 

Principal, Ramsey Training School 

Idaho State School and Hospital 

Box 47 

Nampa, Idaho 83651 

Jim Nelson 

Alpine School District 

50 North Center 

American Fork, Utah 84003 

Willis G. Nelson 

Superintendent 

Bonneville School District 93 

2560 Hillam Drive 

Idaho Falls, Idaho 83401 

Patricia Nelson 

RMRRC 

2363 Foothill Drive 

Salt Lake City, Utah 84109 



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Arlo Niederer 

Acting Director, Special Education 

School District 1 

P.O. Box 1089 

Rock Springs, Wyoming 82901 

Jack Norton 
Teacher/Deaf, Blind 
Utah State Training School 
American Fork, Utah 84003 

John A. Ogden 

Director, Mountain Plains Regional 

Center for Services to Deaf-Blind 

Children 

1346 Lincoln 

Denver, Colorado 80203 

Steven Oliver 

Primary Children's Hosp. 

Developmental Disabilities 

363-1 2th Avenue 

Salt Lake City, Utah 84103 

Mary Ellen Ormiston 

203 University Village 

Salt Lake City, Utah 84108 

Velda Pace 

52 North 100 West 

Delta, Utah 84624 

James R. Parks 
Education Program Specialist 
Division of Special Education 
1 535 West Jefferson 
Phoenix, Arizona 85007 

Jeanette Paul 
Springfield, Idaho 83277 

Carmen Paulsen 

Parent 

1926 LaCresta Drive 

Salt Lake City, Utah 84121 

Margaret M. Pelham 
148 North 9th East 
Brigham City, Utah 84302 

Everett D. Peery 

Professor-Administrator Special Education 
MCHC - Eastern Montana College 
Billings, Montana 59101 

Brent L. Pitt 

263 West 4500 South 

Murray, Utah 84107 

Sandy Prentice 

Department of Environmental and 

Community Services 

Nampa, Idaho 83651 



Brent Price 

School Social Worker 

48 East 1st North 

St. Anthony, Idaho 83445 

Steve Purcell 
2475 Leslie Avenue 
Idaho Falls, Idaho 83401 

Connie Ray 

Resource Specialist 

1111 Court Avenue - Courthouse Annex 

Roseburg, Oregon 97470 

Joseph C. Reed 

BOCES Coordinator 

Box 112 

Kemmerer, Wyoming 83101 

Dr. Alan F. Reeder 
Northwest Regional Instructional 
Materials Center - University of Oregon 
1645 Fairmount Boulevard 
Eugene, Oregon 97403 

Dawn Richards 

Faculty, Special Education 

University of Utah 

217 Milton Bennion Hall 

Salt Lake City, Utah 84112 

Steven Richards 

Special Education Coordinator 

Route 1, Box 33E 

Helper, Utah 84526 

C. Grant Richins 
Governor's Board 
Route 3, Box 35 
Burley, Idaho 83318 

Devoe Rickert 
MR Specialist 
Utah State University 
Richards Hall 
Logan, Utah 84321 

Lorraine Roberts 

Special Education Coordinator 

Granite School District 

340 East 3545 South 

Salt Lake City, Utah 84115 

Dr. Philip Roos 

Director, National Association for 

Retarded Citizens 

2709 Avenue E. East 

Arlington, Texas 76011 

Becky Rose 

296 South 2nd East 

Smithfield, Utah 84335 



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Terry Rudolph 
Special Education Teacher 
436 South Hayes St. 
Pocatello, Idaho 83201 

Evelyn J. Rudy 
School Psychologist 
1601 Custer 
Billings, Montana 59102 

Susan Ryberg 

Faculty, Special Education 

University of Utah 

217 Milton Bennion Hall 

Salt Lake City, Utah 84112 

Ken Salzman 
5391 Willow Lane 
Murray, Utah 84107 

Arnold D. Schieferstein 
Director of Special Education 
School Administration Building 
8th & Elm 
Casper, Wyoming 82601 

Judy A. Schrag 
Idaho Outreach Coordinator 
5050 Allamar Drive 
Boise, Idaho 83704 

Rick Schroeder 
Clinical Service Building 
Regional Resource Center 
University of Oregon 
Eugene, Oregon 97403 

Marlow Schuldt 
Teacher - Deaf-Blind 
Utah State Training School 
American Fork, Utah 84003 

Francis Schwaninger-Morse 

RMRRC 

2363 Foothill Drive, Suite G 

Salt Lake City, Utah 84109 

Robert R. Schwarz 

Director 

Center on Human Development - (CSB) 

University of Oregon 

Eugene, Oregon 97403 

W. Sengstock 

Associate Professor 

4208 St. Marie Court 

Stone Mountain, Georgia 30083 

Elaine S. Sharp 

Executive Director 

MRAU 

211 East 3rd South, 214 

Salt Lake City, Utah 84111 



Dr. Richard Sherr 

Lancaster- Lebanon Intermediate Unit 

1383 Arcadia Road 

Lancaster, Pennsylvania 17601 

R. W. Singleton 
Superintendent of Schools 
CH. Montana Region II Council 
215 Maryland 
Conrad, Montana 59425 

Dr. Karlton Skindrud 

Assistant Professor of Education 

School of Education 

California State College, Dominguez Hills 

1000 East Victoria Street 

Carson, California 90747 

June Smith 

2475 Leslie Avenue 

Idaho Falls, Idaho 83401 

William Smith 

Field Representative - Educational 

Programs 

Mountain Plains Regional Center for 

Services to Deaf-Blind Children 

1346 Lincoln 

Denver, Colorado 80203 

Randy Sorensen 
State Resource Coordinator 
Project Outreach-Utah 
1 234 Roosevelt Avenue 
Salt Lake City, Utah 84105 

Frank South 

RMRRC 

2363 Foothill Drive, Suite G 

Salt Lake City, Utah 84107 

Ann Stamos 

Developmental Disabilities 
Primary Children's Hospital 
363-1 2th Avenue Annex 
Salt Lake City, Utah 84103 

Sandra Lee Stout 
Teacher— Headstart 
Matheson School 
1240 American Beauty Dr. 
Salt Lake City, Utah 84116 

Linda Summers 
Occupational Therapist 
472 North 50 East 
Orem, Utah 84057 

Paul Swatsenbarg 

Special Education Supervisor 

Idaho Department Environmental 

and Community Services 

P.O. Box 1158 

Twin Falls, Idaho 83301 



124 



125 



Virginia Sweeney 

Gifted and Volunteer Services 

Granite School District 

340 East 3545 South 

Salt Lake City, Utah 84106 

Dr. Richard Swenson 

Director, Title 1 

Boulder River School and Hospital 

Boulder, Montana 59632 

Judy Syndergaard 

Teacher-Severely & Emotionally 

Disturbed 

2413 9th Avenue West 

Billings, Montana 59101 

Mae Taylor 

Communication Disorders 
8689 Kings Hill Drive 
Salt Lake City, Utah 84121 

Dr. Evelyn Thirhill 

Director, Learning Laboratories 

110 Stanford 

Pocatello, Idaho 83201 

Shanna Thomas 

735 East 4255 South 

Salt Lake City, Utah 84107 

Jane Thompson 

Director 

Con Amore Training Center 

Rt. 2 

Roosevelt, Utah 84066 

R. Paul Thompson 
Chairman, Task Force on 
Severely Handicapped BEH 
7th and D Street, S.W. 
Washington, D.C. 20202 

Gerry Ure 

RMRRC 

2363 Foothill Drive, Suite G 

Salt Lake City, Utah 84109 

Tom Valeski 

RMRRC 

2363 Foothill Drive, Suite G 

Salt Lake City, Utah 84109 

Chuck Vanover 

Coordinator of Curricular Services for 

Exceptional Children 

Office of Exceptional Children 

State Department of Education 

Capitol Building 

Cheyenne, Wyoming 82002 

Dr. Stan Vasa 

Assistant Professor Special Education 

Room 35, Education Hall 

University of Wyoming 

Laramie, Wyoming 82070 



Elizabeth Vigeon 
5456 South 700 East 
South Ogden, Utah 84403 

Elaine Wachter 

Special Education Teacher 

1006 Second Street 

Coeur D' Alene, Idaho 83814 

Mardean Wahlen 

2260 East 4800 South No. 29 

Salt Lake City, Utah 84117 

Dave Wallace 
Instructional Consultant 
114 Second Avenue 
Coralville, Iowa 52240 

Myrna Wallengren 
Supervisor Special Education 
Granite School District 
340 East 3545 South 
Salt Lake City, Utah 84106 

Angela Wanielista 
Director of Public School 
for Handicapped 
186 North 1st West 
Moab, Utah 84532 

Nelda Warnick 

Director 

Comp. Therapy 

Utah State Training School 

American Fork, Utah 84003 

Pat Wathen 

Clinical Service Building 
Regional Resource Center 
University of Oregon 
Eugene, Oregon 97403 

James F. Watkins 
Superintendent of Schools 
111 E. Lincoln Boulevard 
Libby, Montana 59923 

Emy Lou Waller 
Teacher of TMR 
School District No. 1 
Torrington, Wyoming 82240 

Kris Welling 

1344 Colonial Drive 

Salt Lake City, Utah 84108 

Dan M. Wells 
Director 
Route Box 58-S 
Helper, Utah 84526 

Dolores Webb 
Director Guidance Services 
Jordan School District 
9361 South 400 East 
Sandy, Utah 84070 



126 



Robert West 

RMRRC 

2363 Foothill Drive, Suite G 

Salt Lake City, Utah 84109 

Frederick White 
Consultant - Special Education 
90 North 100 West 
Heber, Utah 84032 

Kay Whitham 

Staff Specialist 

I.R.M.P. 

50 North Medical Drive 

Salt Lake City, Utah 841 1 2 

Shirley Wilkins 

Teacher-Director New Life Training 

Center 

557 West 2-1 /2 South 

Vernal, Utah 84078 

Elaine Wilkenson 

Generalist 

Tooele Central School 

55 North 1st West 

Tooele, Utah 84074 

Naomi Willes 

Education Director 

East Idaho Child Development Center 

2475 Leslie Avenue 

Idaho Falls, Idaho 83401 

Patty Willis 

Exceptional Child Center 
Utah State University 
Logan, Utah 84321 

Jim Woolsey 

Chief Social Worker— Rehabilitation 

UUMC Rehabilitation Department 

50 North Medical Drive 

Salt Lake City, Utah 84112 

Dean T. Worlton 
Director, Pupil Personnel 
Alpine School District 
50 North Center 
American Fork, Utah 84003 

Bob York 

University of Wisconsin 
427 Education Building 
Madison, Wisconsin 53705 

Richard Young 
Jordan Resource Center 
433 East Center Street 
Midvale, Utah 84047 

Julie Yoder 
Microbiologist 
5600 Lubkin Street 
Boise, Idaho 83704 



RMRRC STAFF 



Before, during and after the conference, each RMRRC 
staff member had several assignments that dealt with 
the conference. Major role responsibilities, including 
specific workshop assignments follow: 

Barbara Ashford - Reception, registration, conference 

office 
David Bradford - Message center. Systematic Delivery 

System, compilation of evaluation 
Judy Ann Buffmire - Chairlady, Options for Unserved 

Children 
Roberta Carter - What is Relevant Education, social 

hour 
Shauna Edmond - Conference office, printing, copy- 
ing materials 
Vance Engleman - Conference coordinator, co-editor 

post-conference document 
Donna Gough - Conference secretary, travel, pre- 
conference communications, post- 
conference document 
Susan Harrison - What is Relevant Education, center- 
pieces and favors 
Merrill Johnson - Tape recordings of keynoter and 
topical speakers. Options for the 
Unserved Children 
Jan Mallett - Systematic Delivery System 
Doris Mason - Options for the Unserved Children, 

post-conference document 
Mack McCoulskey - What is Relevant Education 
Mene McKenna - Reception, registration 
Jean Moore - Parent Education, editor post-conference 

document 
Patricia Nelson - Media, Identification of Constraints 
Frances Schwaninger-Morse - Identification of Con- 
straints, compilation of 
evaluation 
Frank South - Systematic Delivery System 
Gerry Ure - Reception, registration 
Thomas Valeski - Photos of conference. Parent Educa- 
tion 
Robert C. West - Options for the Unserved Children, 
social hour 

Co-hosting the conference with the RMRRC staff was 
the faculty of the Department of Special Education, 
University of Utah. They are: 

Grant Bitter 
Mary Buchanan 
Philip C. Chinn 
Clifford Drew 
Robert L. Erdman 
Cyrus Freston 
Anthony LaPray 
Carol Michaelis 
Jeanette Misaka 
LaDawn Richards 
Susan Ryberg 



Graphic Design and Production by UNIVERSITY DESIGN, Printing by PRINTING SERVICE, 
both services are agencies of the UNIVERSITY OF UTAH. 



128